But that's if I paid attention. As a self defense mechanism, I don't. I can't, at least not all the time. I take care of myself in the best way that I can, but I ignore the way it feels if nothing I feel is alarming. Walking around every day in pain isn't something I can afford to spend a lot of energy on. I don't have much energy most days, so why waste it?
March is Autoimmune Disease Awareness Month and I am one of the 50 million Americans who have at least one autoimmune disease. In fact, I have so many autoimmune diseases that I've been diagnosed with something called Multiple Autoimmune Syndrome or, as I like to call it, non-lupus lupus.
My autoimmune problems are a mouthful of a list: Psoriasis, psoriatic arthritis, hypothyroidism, recurring scleritis and Celiac disease. And this list doesn't include the resulting conditions that occur from them, such as my harsh Vitamin D deficiency or my awful anxiety. Psoriasis is a skin condition, psoriatic arthritis points to the joints, hypothyroidism is the degradation of the thyroid, scleritis affects my eyes and Celiac disease is, as most of you know, in my stomach. Despite their various locations, however, they all share one thing in common: Each condition involves my immune system attacking an otherwise healthy part of my body, thus the term autoimmune.
Society has a lot of opinions on how a chronic illness defines a person. These stereotypes can fuel issues among friends and family. You can find a million articles battling those misconceptions, but I'd like to add to them from my own personal perspective.
What I wish everyone knew about having Multiple Autoimmune Syndrome.
1. I am not weak.
In fact, having autoimmune conditions has only proven to me how strong I can be. I can get up, walk, exercise and function in society all while in pain that many people don't experience day-to-day. I can have psoriasis plaques covering my body or hives on my face, but still go to the store or work an event without feeling shame or insecurity. I can gain 10 pounds in a week from inflammation and stomach issues, yet I simply switch jean sizes without freaking out about the number on them. I do not have a self-image problem. This isn't to say that I haven't had them or that I don't have select days where it bothers me but, for the better part, I live my life without concern for what others think of me. And I owe that to my disease.
2. I am, however, in pain. Currently. Yes, now.
Just because you see me smiling and functioning as you would expect a normal, healthy individual to function doesn't mean that I'm not experiencing some sort of pain at that very moment. Like I mentioned at the beginning of the article, I've gotten very good at ignoring the low-grade pain. The only time that the pain inhibits me is when it gets above my (very impressive) pain threshold. If I spent all day displaying the amount of discomfort I'm in on my face, I would waste precious, limited energy on something unproductive. And, quite frankly, I'd probably not be the easiest person to be around.
3. If I say I can't, I can't.
I used to push myself until I hurt myself. I didn't want to be "that chronically ill person that can't do anything." So I ignore most of my pain and strive to live as normal of a life as I can. That being said, if I back out of plans once in a while or cancel on arrangements every great blue moon, please don't take it personally. It's not that I don't want to hang out or see you or go to that function we've been planning on for months. It's that, for whatever reason, today is a high flare day and my pain level has exceeded my threshold. I don't want to be that person that wears their pain on their face and is miserable to be around, so I'm deciding to stay in. Trust me, it's more for you than it is for me.
4. Autoimmune problems take a long time to be diagnosed.
It took four months and three doctors plus a hospital visit for them to property diagnose that my immune system was attacking my eyes. In that time, I lost my vision and had immense bruising pain in and around my eye. Squinting my eyes as the water ran down my face in the shower was probably a good 9 on my 1-10 pain threshold. Before I was property diagnosed, conditions like diabetes, MS and pituitary gland tumor were thrown around. And this is just one story.
5. Sometimes, you don't always get a clear answer as to what's ailing you.
Let's talk about my Celiac disease adventure, which was five months of GI doctor visits, diet changes, tests that included eating and drinking horrible things and eventually, a endoscopy/colonoscopy, which I affectionately refer to as being Roto-Rootered at both ends.
|"Okay ma'am, spread your cheeks!"|
6. Challenging my diagnoses is inappropriate.
Challenging my statements about my disease suggests that I don't know myself or that I'm making it out to be worse than it is. It says that you don't believe me. It suggests that the hours upon days upon years I've spent researching my diseases so that I can properly take care of myself has been worthless. Many chronic illnesses, and autoimmune diseases in particular, are invisible illnesses, meaning that they aren't always displayed for everyone to see. Just because I'm not in a wheelchair or have a disabled parking sticker on my car or have visible marks of my illness doesn't mean I'm not sick. They're also terribly hard to diagnose and energy-demanding to maintain. To this day, I've never had my Celiac disease 100% confirmed by test but it is officially in my charts and going gluten-free has cleared up the 12-hour stomach-pain-induced vomit-fests, so I'll take it. However, I have had friends who know the full story of my GI testing correct me publicly when I say I have Celiac disease. I'm not saying it to buy into a gluten-free fad.
I love bread and pasta, and the gluten-free versions just don't do it justice. If I say I have Celiac disease, which is true according to my doctor (do you want a copy of my file?), it's because I don't want to explain the incredibly long story of the five months of testing that led to an inconclusive result. It's just as exhausting to tell as it is to live through. And explaining it or not explaining it doesn't make it any less real that eating gluten is bad for me.
7. It takes a lot of effort to maintain my health.
I have to put my health first, ahead of my family, ahead of my career. It is my primary job. I schedule in my doctor's appointments and exercise courses before I schedule in work or events. I don't have a choice. If my health slips, everything else gets dragged down with it. Even the little stuff is difficult. While it may take "normal" people scaling back their calories a bit to shed the extra weight so they look better, it takes me going on a restrictive diet of 26 specific foods, fluctuating calories to keep my metabolism up and more exercise than my joints can sometimes handle to shed the weight that will cause my autoimmune disease to flare up more often. While most people may see their doctor for a once-yearly checkup and a few stray moments in between due to colds or various random issues, I have a lab order sitting on my kitchen table right now for my monthly blood work. It doesn't help that I have needle anxiety, so it takes me a while to build up the will to go in. Speaking of anxiety...
8. For someone with autoimmune problems, stress is a killer.
9. Natural remedies? Already tried it. (aka I can't be cured.)
Chances are, if you have natural remedy you think will help and/or solve my condition(s), I've already tried it extensively. What I truly need is my doctor-prescribed medication that keeps me alive and (semi-)functioning. And even those medications won't cure me. That's what the chronic in chronic illness means - it means it never goes away or gets better. It just is.
10. Having a chronic illness does not mean that I qualify for, or even want, disability.
The first question I get asked when describing my flares is, "Have you tried applying for disability?" The answer is yes, I was declined and, in retrospect, I honestly don't want disability. I was declined because I'm still pretty mobile, I have more okay than bad days and, for the better part, I don't need assistance to live my life. Even if a grocery run can take me five hours just to even get in the car as it did last Friday, I still get there. Even worse, if I were to qualify for and receive disability, I could be limited in the amount of hours I can spend working - or cut from working all together. As a caricature artist that's incredibly happy with my career, I'd rather not risk that. I'm quite happy with my life as it is. If something were to change - if my health were to decline rapidly or my condition began taking away something I need to work, such as my vision on a more permanent scale - then yes, I will re-apply for disability. But for now, I'm good.
I do not want your pity. Only your understanding.This is something that my husband had to learn the hard way as we adjusted our life and marriage when I was diagnosed. For my husband, it meant, for example, encouraging me while attempting to get out of bed instead of giving me a hand. The encouragement meant more to me than anything else and, quite frankly, if I can't get out of bed without help, I'm likely not going to be able to function during a normal day by myself. And sometimes, the best form of encouragement he can give me is telling me that it's okay to stay in bed all day if that's what I need to do. Just hearing those words, "It's okay to take care of yourself first," means a lot to me.
Sometimes being chronically ill feels like a failure. I can't work as much as I'd like and I can't always see my friends when I want because I don't have the energy. I'm not the wife and pet owner I want to be. But I have to often remind myself that having a chronic illness does not mean I'm useless. Just because I'm not the best friend or wife doesn't mean that I'm not a pretty darn good one. And I'm doing it all while my body fights itself. I'd say that doesn't make me a failure; it makes me a fighter.
I am not weak. It's just a different kind of strength.