The Illness is Chronic, but I’m Also Iconic

Are you struggling with, or maybe you are lucky and are thriving with, a chronic illness? Do you know someone who is? I bet you do, even if you don’t know it. So many people are trying to manage “invisible illnesses”. While some may think someone is “faking” being sick, we are actually “faking” being well most of the time. My Illness is chronic, but this article is iconic! So, keep reading!

Chronic Illness

The most basic definition of a chronic illness is a condition that continues beyond 6 months in time. That is what makes it chronic vs. acute. It is pretty easy to differentiate once you think about it with common examples: a case of pneumonia would be an acute illness. You need treatment and usually take medications, may even be hospitalized. But usually after a short amount of time you feel better, you are healed and that is apart of your past.

But let’s say, you continue to have complications, you now have more trouble breathing and you are seeing a pulmonologist, and 6 months later you are now diagnosed with asthma or COPD. That becomes a chronic illness. 

Invisible Illness

An invisible illness is one that is, well invisible, to a casual onlooker. Someone may not “look sick” and their symptoms aren’t obvious to the outside world. Only a small amount of people with disabilities report using some sort of visible aid, for example a wheelchair or cane. With an invisible illness there is no rash, cast, or other measurable and easily identifiable symptom. 

Along with being invisible to the outside, and difficult to see for the casual onlooker, these illnesses are often hard to diagnose even to the professionals. Symptoms can be that of many different conditions, lab results may not be conclusive, and response to treatment may not be the same for everyone.

Unfortunately, many of these diagnosis’ and conditions aren’t always thought of as valid because they can’t be seen or easily treated. Too often, especially because many symptoms are more subjective, there is an element where the patient has to be believed or validated by others, especially healthcare providers, and far too often they are blown off or told it is “in their head”. This starts a dangerous and depressing cascade for so many people who suffer with these invisible illnesses. More into that later. 

A 2018 study about pain management showed that men who sought care for pain related conditions were seen as “brave”, while women seeking care for the same symptoms were viewed as “emotional”. 

read more down below

Pain Research and Management

Examples of Invisible Illness:

Multiple Sclerosis

Type 1 Diabetes

Lupus

Rheumatoid Arthritis

Chronic Migraines

Crohn’s Disease

Fibromyalgia

Also, I would consider most mental illness diagnosis’ the ultimate invisible illness. Examples include depression, anxiety, obsessive compulsive disorder, bi-polar disorder, postpartum depression and many more.

Autoimmune Disease (definition)

A condition in which the body’s immune system mistakes its own healthy tissues as foreign and attacks them. Most autoimmune diseases cause inflammation that can affect many parts of the body. The parts of the body affected depend on which autoimmune disease a person has. Common signs and symptoms include fatigue, fever, muscle aches, joint pain and swelling, skin problems, abdominal pain, digestion problems, and swollen glands. The symptoms often come and go and can be mild or severe. There are many different types of autoimmune diseases. They are more common in women and can run in families. Also called autoimmune condition.

“you know you’re a tough bitch when the only thing strong enough to really hurt you is yourself” ashley, RN

National Cancer Institute www.cancer.gov

In honor of transparency, here is a review of all my chronic illness diagnosis, come to think of it, all being “invisible illnesses”: 

1. Rheumatoid Arthritis
2. Endometriosis
3. Generalized Anxiety Disorder
4. Depression that started situational and is really wearing out its welcome
5. ADHD-combination, but mostly inattentive type

I think that’s it. I have asthma but after my body got used to moving to the north carolina environment, it’s been very mild. Haven’t used any meds for that in a while. Oh, I guess my infertility is a diagnosis…

6. Female infertility-unexplained

That’s A lot Right?

It is. And I have a prescription medication for every single one of them. In fact, I take 8 different prescription medications. So when healthcare providers open my chart, it isn’t going to look a lot like other 35 year olds. My problem list is long, and my medication reconciliation will take longer. 

Check out one of my earlier posts to read more about the link between adverse childhood experiences (ACE’s) and chronic illness

Here are just a few ways these illnesses effect my daily life, some days being better, some days being much worse…

I very regularly have joint pain in my knees, hips, fingers, toes, mid-back, ankles, wrists, and sometimes shoulders. I feel constantly fatigued, and coffee or even a nap doesn’t help. Some of my medications make me very sensitive to the sun, so I can get very painful sunburns if I am not careful. Some of my meds decrease my immune systems ability, so it can stop being an idiot and attacking my own body, so if I get sick, I get SICK. I have had a cough for 6 weeks now and really I hurt my ribs because of it.

Endometriosis causes heavy and painful periods, plus before my IUD my period came every 21-24 days and I bleed for 7. So I may have had two weeks off before my next period started. I can go through an ultra size tampon in 2 hours and have bled through to my scrubs at work. It can cause pain during and after sex. So that, plus bleeding half the time and joints hurting and my hips feeling so stiff I can barely walk, well, let me just say it effects my marriage. And that is without even diving into the sometimes unbearable symptoms of mental illness, those are just problems caused by number 1 and 2 on the diagnosis list!

My Long Road to Diagnosis for Chronic Pain

Ok so this story is long and spans many years. But I think it’s important for people who aren’t personally familiar with these kind of diseases to see how hard it is not only to live with, but to get treatment for and even belief of. And even more important, for anyone reading this that can relate. Your story may be even longer and more painful than mine. When you go through trials like this, it can feel very lonely. 

So many of these illnesses tie in and weave through each other, but this story is mostly about the chronic pain and rheumatoid arthritis. To read my story of endometriosis and infertility, click these links!

Let’s wind it alllll the way back

When I was an older child and teen, I seemed to always be getting hurt. Sprained ankles, knee injuries and pain. Seemed to have very weak joints and muscles, or just clumsy and unlucky.

Ok, fast forward to nursing school years. I started having episodes of feeling exhausted. Not just tired from studying or stress, because I actually didn’t use to stress out as bad as I do now. But not feeling enough energy to wash my hair. It was too hard to hold my arms up over my head that long. I had two episodes just that first semester where I had near-syncopal episodes. That low blood pressure feeling: ringing in my ears, weak legs, dizzy, nauseated. Then came knee pain. Well I had twisted and sprained my knees multiple times through my life, so that seemed just par for the course. I just had “bad knees” right? “Bad knees” run in my family. That’s what people tell you. Then I started having severe hip pain. 

Hip pain is the worst. It’s such a big and important joint, you can’t not use it. And it’s a hard spot to ice. Don’t recommend: take care of your hips. Then the pain extended to my fingers and toes. That is a whole other monster. Very difficult pain to manage. Again, you don’t realize how much you use your fingers and toes until they hurt all the time. 

I believe that is when I started to seek help

Despite growing up with such crappy parental care (never being taken to the dentist, no supervision, etc) I was pretty good at keeping up with doctor visits. Once I could drive, I took myself. Needing birth control pill refills is actually a pretty good way to keep up with regular primary care check ups. If my memory serves, my PCP was the first one who said I was probably just depressed. Now, I do know that mental illness can have real physical symptoms. But at that time, I really didn’t feel depressed. But I said, you know what, call me crazy. If it helps me feel better, call me what you want.

She started me on Lexapro. It didn’t help. She did draw labs and I guess they were all normal. Which is so frustrating. Because it just does not help the fact that so many people do not believe you when you say how much you hurt or how tired you feel. 

So next, she told me I probably had fibromyalgia and started me on Cymbalta. That medicine was not only an anti-depressant, but I guess was also found to help with physical pain. Didn’t help. 

Fibromyalgia is a diagnosis of process of elimination. Can’t find anything else, but you have chronic pain and fatigue, you can have fibromyalgia. At that time (I am hoping the information about it has grown), the pain was thought to be more muscular and certain “trigger point” specific. My pain was very distinctly and specifically in my joints, but whatever. Again, just help me! She started me on Lyrica, which was brand new at the time. It made me feel super drunk when I woke up in the middle of the night after taking it before bed, and not the good drunk feeling. 

So let’s take a second to pause and do a reality check

Remember I said this all started in nursing school. So hopefully some nurses are here reading and I wouldn’t have to explain anymore. Any nurse or significant other of a nurse knows nursing school is no freaking joke. It’s jam packed with information, clinical rotations, super strict grading systems, and instructors who seem to have no souls. So imagine trying to fit in multiple doctors appointments, trips to the pharmacy, trying out medicines and hoping they help, but even more so, hoping you don’t feel too drowsy to drive to school or take care of patients the next morning. So waking up in the middle of the night feeling dizzy and drunk was not the move. 

She finally referred me to a specialist. The specialist for joint pain and autoimmune diseases are rheumatologists. Even living right outside of DC in a pretty populated and busy area, there were barely any rheumatologist options. So it took forever to get an appointment and if I didn’t like this doctor, tough. And of course, I really did not like this doctor. She was so rude and condescending and I didn’t feel cared for at all. She did do new lab work, but other than that kinda just shrugged her shoulders at me, and said fibromyalgia is not a rheumatology problem. I was in tears saying, please, I don’t know what is wrong with me, but I cannot function like this. Oh! I almost forgot! By the time I was at this point in my journey I was graduated from nursing school! That is how long this process was taking. 

“You will just get addicted”

I remembered that specific point in time because of what the doctor said to me next. She said, “you’re a nurse, you know what I could give you for pain. There’s acetaminophen (Tylenol), NSAIDS (aleve, motrin), and narcotics. I am not giving you narcotics, you are just 23 years old and will just get addicted”. That is so burned into my memory, that I am pretty sure that was word for word. So I left there feeling worse than I felt walking in. 

I went back to my PCP, retelling her what happened and I cried. Nothing was helping, I had even ended up in the emergency room a few times because the pain was so unbearable. I was having chest pain, which the ED doctor told me was most likely inflammation and pain where the ribs meet the sternum (costochondritis). I promised my doctor I was not “drug seeking”, but in a way I was; I was seeking for treatment that would help.

She started me on Tramadol, which isn’t technically a narcotic, but a stronger pain medicine, and it helped at least when the pain was getting severe. It didn’t make me feel dizzy or unable to work. It actually didn’t make me feel drowsy, quite the opposite. Tramadol gives me insomnia, so I couldn’t take it for the pain I would feel at the end of a long day. And that’s where my journey waded for a while. 

I didn’t even really have a diagnosis, other than “mystery chronic illness”

It was super annoying when trying to explain why I felt like shit or why I had prescription medications, I have “uh this chronic joint pain, maybe fibromyalgia, some mystery illness”, was what I usually said. 

I spent this time always with this pain and condition effecting my life everyday. I tried exercising to help, I usually pushed myself too hard when I had times of feeling ok, and then felt like death for weeks and got totally out of habit and back to square one as far as fitness. Also, I was dealing with trying to have a baby and undergoing fertility treatments, which is what I had to do to make that happen, even at the age of 25.

Next, I tried the chiropractor. My OB/GYN suggested one she used herself. “But I don’t have back pain”, I told her… that’s like the only pain I don’t have. She thought, well maybe something is out of alignment elsewhere in my body and its worsening some sort of pathway to my other joints. Sure, I will try anything. I enjoyed the chiropractor actually. The doctor was really nice and seemed to have sympathy for what I was going through and wanted to help. The chiropractic care felt good at that moment, who doesn’t love a good cracking. But after a while, I started to have back pain, which like I said, I didn’t have before. Greeeeeat, right? 

The Move to North Carolina

Fast forward a couple of years when we moved to Raleigh. I worked for Duke University health system and they are supposed to be some of the best right? So I did have some hope for better medical treatment. I found a new PCP who I seemed to vibe with and she redid all my lab work and my ANA’s were positive. ANA stands for anti-nucleated antibodies, which is a very non specific marker for inflammation and auto-immune diseases. But, everything else was normal.

She referred me to Duke Rheumatology and to be honest, I was terrified. Having to go through my history and story every time I saw someone new was very upsetting. This doctor did seem to care. She tried to empathize and explain that she has other patients that go through similar experiences. She gave me a trial of prednisone to see if I felt better. I felt fantastic! It was a noticeable difference in my pain, stiffness, and energy. I guess that showed the doctor that maybe it was real. She started me on Plaquenil, which is a medicine used to treat Lupus and Rheumatoid Arthritis. It seemed to help a bit. So I stayed on that and added a few different things in here and there trying to make me feel my best. 

Soon after staring with Duke Rheumatology, that doctor left the practice. Great, another doctor, another new patient appointment. I would well up with tears at the start of every appointment. So trying to explain to each doctor my story and that I wasn’t “just depressed” didn’t seem to be matching with how I acted I am sure. But it was traumatic re-living this experience all the time. Luckily, this doctor was even better. He was very clear about believing me and wanting to help. I asked him for the one thing I still hadn’t gotten: a name. An official diagnosis. He seemed to find humor in this. He diagnosed me with “sero-negative rheumatoid arthritis”. I guess that was the closest we can get based on how I respond to different treatments. I’ll take it. 

That really was a long road

Much longer than I even thought it would be. Reading that story might give a bit of insight on why it took me so long, a few years ago, to admit I did have something going wrong with my mental health. I spent such a long time defending the fact that I wasn’t “just depressed”, it had become hardwired in me that I just couldn’t have a mental illness. Even after years of established treatment and care with doctors that weren’t horrible, I just knew when I went to get treatment for my severe anxiety I was having, someone would be like, “see! I knew it! We always knew it, it’s all in your head”. That was also the anxiety talking and lying to me, but it goes to show how traumatized I am by that whole experience.

That horrible journey was medical trauma. And it made my mental health so much worse, because it delayed me seeking treatment for a much longer time than it should have. 

Fibromyalgia

I wanted to take some time to dive into Fibromyalgia a bit. It’s a disease that needs much more research and most people don’t understand it or aren’t even familiar with it. If you are a healthcare worker reading this, you might be familiar. And I am willing to bet, when you hear fibromyalgia you have an opinion and preconceived ideas. I know, I know, we try not to pre-judge, but we all do it. There are just those complaints or diagnosis that we read or see and we may at least roll our eyes. We aren’t perfect. I mean, I am pretty close, but not everyone can be as good as me (wink).

But in all seriousness, even as someone who went through this process, suffers with chronic pain, has been told maybe its fibromyalgia and dismissed, I still know that a patient with fibromyalgia could be difficult to care for. But that is partly because of the “care” they often receive, so maybe pushing judgement to the back, and treating a patient with respect and empathy could make the difference not only in your day at work, but for that patients life. 

I experienced an example of this just yesterday at work

We had a patient on our antepartum unit (that’s where we put patients who are pregnant, but not in labor) that was experiencing pain from a lupus flare. She also has fibromyalgia and anxiety in her medical history. When getting report on this patient in my charge nurse report, there was an attitude of ‘I don’t know why she is here’. Which I do understand. We get a lot of patients just because they are pregnant, but really do not have any OB complaints, and we aren’t always the best nurses to take care of them. The message I received was about all the pain medicine she was getting, with an eye roll. Someone commented, “dilaudid? morphine? flexiril? If I took all that I would be dead”. My reply was, well I wouldn’t be. I tried my best to shut down the judgement.

And what I said was true. I have a gene mutation called MTHFR, which has many fun effects, but one being I don’t absorb medicine as efficiently. I tend to be on the higher doses of all my medicines. Also, when you go through chronic illness and chronic pain, you know that the pain is so terrible it might take a lot of interventions to get it under control. Also, you may have built up a tolerance to some medications from taking them more often than the average person.

Fibromyalgia is a disease of widespread pain, fatigue, and sleep difficulty. It is thought that it could be a problem with being more sensitive to pain and abnormal pain processing. For any labor and delivery nurse reading this, that should sound possible. Healthcare providers: we all know that patients process and perceive pain differently from each other. We have had patients that genuinely look in agony at 3 centimeters, and we have patients that show up to triage not even sure if they are in labor and they are 8 centimeters. That can’t just be pain tolerance. People have to have different nerve and pain sensory processes. 

Link Between Fibromyalgia and Mental Illness

Fibromyalgia is often associated with depression and even borderline personality disorder. But what is cause and what is effect? Are you depressed because you’re in so much pain, and do you present with a personality disorder because you now distrust people especially medical care providers? In my opinion, most of the time when you have two stories, two opinions, two “truths”, it it probably a combo. 

Some complications of fibromyalgia, other than chronic pain, include major depression, higher rates of hospitalizations, and higher rates of suicide and injury. Fibromyalgia is twice as common in women as men. That is something we have GOT to dive into next. 

A Womens Disease

Many of these invisible illnesses affect women more than men. Many of these conditions are also harder to treat and harder to diagnose. And again, I ask the question, what is cause and what is effect? Are these illnesses under-researched and not the focus of medical advancements because they effect women more, therefore aren’t made a priority in our patriarchal society? Something to think about. 

A great example of this is erectile dysfunction. ED effects about 19% of men, yet it is 5 times more researched than PMS, which effects about 90% of women. Personally, I have been greatly effected by gender inequality in healthcare, and again, erectile dysfunction provides great insight. Viagara and other treatments for ED are covered by insurance companies, while assisted reproductive therapies (infertility treatment) are not. So it certainly is not an outlandish idea that gender discrimination, even in an implicit bias, greatly impacts these chronic illnesses. 

A 2018 study about pain management showed that men who sought care for pain related conditions were seen as “brave”, while women seeking care for the same symptoms were viewed as “emotional”.  We see the same with women and cardiac disease. Women having a cardiac event may not have typical chest pain; symptoms could include jaw pain, back pain, and fatigue. You can imagine, delaying diagnosis and treatment for a heart attack can be deadly. 

Common Misconceptions About Chronic Illness and Examples of What we are Sick of Hearing

So, please think before you speak, even if you are trying to be helpful…

1. Most illnesses effect older people, or symptoms get worse with age, so if you’re young you should be strong enough to be resilient 
2. If you can attend a social event/vacation/work then it must not be that bad
3. “You should try yoga, exercise, losing weight”
4. The same treatment works the same for everyone
5. Also, each disease has the same symptoms for each person
6. “My friend had ________ and gave up gluten and felt much better”
7. These diseases effect women more because they complain more, can’t handle it, or have more anxiety and depression. 
8. “But you don’t look sick”, If you don’t look sick or tired, you must be having a good day, or maybe even faking it
9. You are going to get addicted to these drugs and need more, or start drug seeking
10. “Wow, you sure have a lot of problems”

I think the “I saw her at a concert the other day, she must be feeling fine”, misconception is a really common one that can be hard to understand, even to a well meaning friend or family member. So let me introduce you to my spoons. 

The Spoon Theory

The spoon theory was thought of and shared by Christine Miserandino, who suffers from Lupus, and used spoons as a unit of energy to explain to a friend how she has to manage life with a chronic illness. Her and her friend were at a diner and spoons were what she grabbed to provide a visual to her friend. She gave her a handful of spoons and said “here you go, this is you and you have Lupus”. 

“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”

Spoonies, or people with a chronic illness don’t often have an unlimited amount of spoons, they have a set amount they have to budget and that can explain why someone could go to a concert on a Friday night and pay for that energy use and having to call out of work on Sunday. 

Budgeting with Spoons

Let’s say you start your day with 12 spoons. Waking up early to take your child to school, that’s 1 spoon. You go to the grocery store on the way home, that’s another spoon. Putting away the groceries, that’s another. You need to shower, that’s usually 2 spoons, but you have to wash your hair and your joints are killing you, so that’s 4 spoons. So now you are not even to midday and you have how many spoons left?

You are down to 5 spoons. Maybe your friend asks you to meet them to go shopping or work out, but you know you don’t have the spoons, so you decline. By the time you pick your child up from school and help with homework, you still have to cook dinner and you are only left with 2 spoons. So that my friends, is how the laundry can’t get done and its cereal night for dinner. 

Sure you could take an advance on the next days spoons, but then the next day is even worse. And that’s what happens when you sometimes push yourselves, but you pay for it the next day. That theoretical day was a day off work for me. So imagine being a nurse in a hospital and working on your feet for 12 hours a day; I have to use the entire utensil drawer just to drive home at night. And that’s why if you ever say, “oh you’re so lucky you ONLY work 3 days a week”, you might get smacked. 

When you run out of spoons, carry your own

This is a tip I thought of. I thought of it more so for my anxiety, but that is also a chronic illness and invisible illness. I purchased some pretty spoons with quotes I like, and I keep them on me and it gives me something tactile to play with either when I am fidgety with nervous energy, or rub the smooth side to try and calm down the anxiety.

My spoons have quotes from Alice in Wonderland. “Do you suppose she’s a Wildflower?”, is very meaningful when you feel different. That is a part in the Disney movie when she is in the flower garden when she first arrives to Wonderland and she is different from all the talking flowers. It can feel lonely and different when you have a chronic illness, but instead of feeling like an outsider, maybe you’re just a wildflower.

“Have I gone mad?” I’m afraid so. You’re entirely bonkers. But I will tell you a secret, all the best people are.

Alice in Wonderland

Celebrities: They’re Just Like Us

In attempt to be even more relatable, here is a list of examples of celebrities living with chronic illness. You may already know about some of these, but use these examples as some food for thought. Think about the schedules and appearances many of these celebs have to put on, and then think about some of the symptoms and/or pain they might be experiencing in their everyday lives.

Mental & Physical

I highly recommend Selena Gomez’ latest documentary airing on Apple TV+ where she gives a sneak peek to her life living with both lupus and bi-polar disorder

I cried like a baby with empathy and relatable agony watching Lady Gaga’s documentary Five Foot Two and listening to her interview with Oprah from 2020 where she reveals some of the hardest elements living with these diseases.

Type 1 Diabetes is an autoimmune disease

Nick Jonas has been open about his diagnosis and works to bring awareness to type 1 diabetes, sharing that it is a life long disease, but one that can be manageable. Four common symptoms that could be warning signs of Type 1 Diabetes are weight loss, frequent urination, excessive thirst, and irritability. Halle Berry is also a celebrity who is living with Type 1 Diabetes.

Endometriosis

Halsey explains how frustrating reproductive illnesses can be because along with the bleeding, pain, and infertility, you can feel like less of a woman.

Sickle Cell Anemia

Sickle Cell is an inherited disorder causing the breakdown of red blood cells as well as making the cells mis-shaped: severely effecting their ability to carry oxygen. It can cause blood clotting, pulmonary embolus, severe pain, decreased oxygenation, and fatigue.

Infertility

Adenomyosis is similar to endometriosis but rather than lining of the uterus, it effects the muscle of the uterus. Gabrielle Union shares in her two books, that I highly recommend, that she has multiple miscarriages and underwent IVF before receiving her official diagnosis. Even though she went to multiple doctors, reproductive endocrinologists that were supposed to be the “best of the best”, none of them even caught this diagnosis. She eventually went to yet another doctor, a female, who saw the signs of her adenomyosis with a quick glance at an ultrasound screen.

#relatable: I am not too familiar with adenomyosis and its differences to endometriosis and if sooner diagnosis could lead to treatment for infertility. I know that when reading this part of her book, ok, actually let me confess: I am not a reader. When listening to her book on audible I couldn’t help but to feel the heartbreak of your body betraying you when you just want to do what millions of women do without even trying every single day.

I went to the doctors, I saw reproductive endocrinologists, spent thousands of dollars. I made the complaints and expressed how I knew something else was wrong and how all my uncommon and hard to diagnose symptoms had to be related… and nothing. If a doctor would have asked me, well, have you ever been diagnosed with endometriosis, maybe I would have been able to have a second child. The sibling for Kylie I have cried about for years, the experience of pregnancy and feeling fetal movement, and naming a baby that I didn’t full relish in and appreciate because I just knew I would have another one.

How Many Diagnosis’ Can One Person Have?

Endometriosis

Lena Dunham underwent a hysterectomy to treat her endometriosis. She explains that while doctors were against this decision to save her ability to carry a pregnancy and have a baby, she had to advocate for herself stating she would never be able to mother someone in this condition. Amy Schumer is another celebrity who has underwent hysterectomy to treat her endometriosis despite her fertility.

Hashimoto’s

Hashimoto’s Thyroiditis is an auto-immune disease that attacks thyroid gland and the leading cause of hypothyroidism. Gina Rodriguez has shared that this disease has caused fatigue and exhaustion, caused weight gain and anxiety; all of which can threaten the ability to be an actress and leading lady. Zoe Saldana and GiGi Hadid are also diagnosed with Hashimoto’s.

The Chronic Conclusion

That’s the thing, there really isn’t any conclusion. As far as I know, these diseases don’t have a cure or end point. I have heard of people being in remission from some of these diseases, going without symptoms or flare ups for years at a time. That said, I have also known people who have died from complications of these diseases. I have a friend die from complications of her Lupus. Lupus destroyed her kidneys. She had already had a kidney transplant years prior, but I believe her pregnancy with twins put her body through a lot of stress and the one kidney she had left started to fail. After that, she went into multi-organ system failure.

It is scary to think about. But we have to think about these things. Those of us with the diseases can never not think about them. I am constantly reminded of my problems when I have to tell my daughter I can’t tuck her in one night because I cannot physically walk up the stairs. When I am in tears while driving because I am feeling excruciating pain holding the steering wheel. Certainly, it’s impossible to forget about the complications of my life with mental illness when I think about my mom dying at 36 years old as I face my 36th birthday coming at me this month.

Other than being informational and relatable, all of this is to say, be kind. Be kind to others, because you never really know what someone may be dealing with. Our world would be so much better with a lot more kindness and a little more empathy.

ashley, RN

Mental Mommy Nurse

References & Further Reading

Invisible Illness and Measurability. July 2021. Jennifer Dobson, MD

https://journalofethics.ama-assn.org/article/invisible-illness-and-measurability/2021-07

What are Invisible Illnesses? July 2022. Sunny Sea Gold. Medically Reviewed by Keri Peterson, MD

https://www.health.com/condition/autoimmune-disease/invisible-illness

I’m a “Spoonie.” Here’s What I Wish More People Knew About Chronic Illness. April 2019. Kirsten Schultz

https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1

The Spoon Theory. 2003. Christine Miserandino. www.butyoudontlooksick.com

What Is an ‘Invisible Disease’ and Why Don’t We Hear More About Them? May 2022. Vivian Manning-Schaffel https://www.shondaland.com/live/body/a40059855/what-is-an-invisible-disease/

50 Celebrities Who Are Fighting Chronic Illnesses. December 2019. The editors of Prevention.

https://www.prevention.com/life/g20671508/celebrities-chronic-illness/