Monday, March 9, 2015

Ten things I wish everyone knew about having autoimmune disease.

If I paid attention to all the little things going on with my body at this moment, I would know that my right knee is pulsing with pain, as is my left shoulder.  My stomach is slightly upset, but not to the point I think I'm going to be ill, my nose is stuffed up and sore, and my left eye has a slight bruising pain in it.  If I run my fingers across my forehead, I can feel a few lumps of underlying hives, and if I touch my forearms, I can feel the patches of dry, flaking skin itching and burning from the pressure of my fingertips.

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!"
After going through all of that, the GI doctor I had only took a single biopsy of my stomach which came back negative for Celiac disease.  He wanted me to come back in a year later to have the whole thing done again.  That meant another full round of gluten being added back into my diet, feeling miserable, and doing the prep work all over again.  That's not energy I can afford to spend.  When I turned it down, he gave me a "cautionary" diagnosis of Celiac disease based on my bleeding stomach villi and reaction to gluten over other potential causes, such as FODMAPs and dairy.  Celiac disease is the official diagnosis on my chart, but it's the fuzziest diagnosis I've had to date.

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.


I have flares, where my immune system attacks me a lot, and periods of normality, where I don't feel awful all the time and attacks are low.  Flares can be caused by a lot of things, including diet, activity, infections and viruses.  But you know what else can trigger flares?  Stress.  Yep.  Good, old-fashioned frustration.  This means that I have to live my life in a way that avoids anxiety (And, you know, getting poked every month while having needle anxiety kind of makes that hard).  As a perfectionist and workaholic, this has forced me to make changes in my life, but it also means I don't interact with people like I perhaps used to.  If someone is stressing me out and I can't get through to them, I either have to ignore them until it passes or, as a last resort, cut them off entirely.  Some people live to ruffle the feathers of people around them.  I cannot, for my health, be around these kinds of people.

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.

16 comments:

  1. It makes me very sad/angry when I hear stories like this. I'm sorry that you have had to put up with such judgement. People shouldn't question YOUR health concerns or split hairs as to what you have or don't have. Heck, why should it matter to people why you eat gluten-free food? Why should you have to explain decisions to people when it has nothing to do with them? I'm amazed that people would call you weak or be judgmental toward you at all.

    Anyway. You're awesome. People who do any of the above are just being judgmental or defensive for some unknown reason. I'm sorry you are burdened with such a condition and I hope medicine will evolve enough to do more for it's treatment.

    P.S. I love the new layout.

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    1. Thank you so much! Fortunately, I don't deal with these most days and nearly all of my current friends are for more understanding than some in the past have been. I think many of these judgments come from a lack of knowledge about the underlying cause. With just a little education, I think many of these ideas can be combated properly.

      Also, thank you for the compliment on the layout! I appreciate it!

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  2. This is awesome. Very well said. I have sarcoidosis & diabetes, both are a bitch and unfortunately they don't play well together. That last paragraph really hit home with me.

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    1. I'm so sorry that you have to deal with those. Having chronic health issues can be so tough. But thank you so much for your kind words!

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  3. I just found you... every thing you have experienced is most similar with mine... I was diagnosed with SLE and Fibromyalgia,and valley fever 12 years ago... when Dr. were just starting to put labels to it... I seem to have heard all the things people think that helps, exercise, eat better, manage your stress, all the da das, Oh and my personal favorite your still young you shouldn't be feeling this way... Well they are right but,,, There is no cure so what now?
    I had been active with low impact yoga and it did helped alot... but other things started happening and got in the way...
    I haven't been to a Dr. for 10 years, they just keep saying they want me to take all these different meds which I think compromise me.. so I endure and listen to myself when it is bad and to what helps...
    The biggest fight of all is the depression, the bad days and the really bad days... I then go to my garden walk around barefoot and fall in love with each and every plant all over again...
    Thank you for this article and bless you with your battles and endurance too... brightest blessing always

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    1. Goodness, I hear the "You're still young!" bit all the time at 26. I joke that I'm a 90-something stuck in a 20-something's body and the 90-something is starting to bleed through, but it hurts to hear all the same.

      I'm so glad to hear that yoga is helping you! And I think taking a walk in your garden in an excellent way for combating the depression that is so common to chronic illness sufferers.

      That being said, I couldn't imagine not being on medication. Without my thyroid medication, I begin balding, sleeping for upwards of 36 hours straight and can't think straight. And a lot of my conditions affect my anxiety, making me unable to socially function if I can't get them under control. So medication, however "unnatural" or "chemical" some people think it may be, is a huge part of my life and I'm extremely grateful for it.

      Thank you so much for your comment though, and best of luck to you!

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  4. i also have an autoimmune disease and just wanted to thank you for saying all these outloud. sending love <3

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    1. Of course! Thank you so much for reading. Sending positive thoughts your way as you manage your autoimmune disease.

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  5. Thank you for posting this! I dont have an autoimmune disease but I have a few close friends who do. I just found your blog through some Wiccan-based pins on Pinterest. I'll be visiting more often now, especially when my own health concerns have been running through my head more. Wishing you welL!

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    1. Of course! Thank you so much for visiting and reading. Best of luck to you!

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  6. Marietta, I've enjoyed so much of your website and thought of lots if comments for lots of pages...
    but this one rang so many bells with me, it took priority : )
    It sounds like an big uphill struggle having all these various aspects of auto ~ immune disease : my heart goes out to you, however I would never have guessed you have all this going on from your cheery, lively posts and enthusiasm for life ~ you've clearly learned so much and have become a strong person from your flexing your will to overcome the constant energy- sapping drain of it all.
    Much of what you say I recognise very deeply, as I have chronic daily migraine which can, if not controlled each day/most days, end up with me being totally sick, unable to function. Luckily I have some brilliant drugs which stop me reaching this point most days.
    I do so recognise some of the points you describe: the 'weak' image(grrr) the letting down of others and your own plans, feeling on a roller-coaster, diagnosis being difficult, and the lack of understanding around.
    I too have learnt much and thankfully find such joy in even the smallest pagan/spiritual delights every day. When I am ill, I try to treat it as a practice in moment to moment management and awareness! Good for the Spritual Jorney, perhaps...: D
    I shall look forward to reading more of your Witchy Words and, by the way WELL DONE, YOU!

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    1. Thank you so much, Evie! I truly appreciate it. I'm so sorry to hear about your migraines. I've only had a few migraines ever, but I couldn't imagine them being a daily threat. Thank goodness for medication!

      The hardest lesson to learn with MAS is that I couldn't just "get over it." I'm always going to be sick. There's nothing I can do to change that. And that realization has been very enlightening for a type A ISTJ Virgo. Some things are just out of our control.

      Thank you so much for all of your kind comments! I apologize for not responding to them sooner but everything here has been so hectic. Best wishes to you!

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  7. I understand completely, I have a very rare disease that makes benign tumours in my body. Yes I have tumour’s in my brain, and in my spine, yes I am in constant pain and get tired very quickly. Does it make me stupid, No, certainly not! Is my magic a hallucination of the tumour. No absolutely not, my coven witches experience the same things and they don't have any extra luggage in their brains and spine.
    My walking is sometimes a bit wobbly, like I'm drunk, I feel drunk and a bit seasick, but did not drink. But some older persons told quite loudly behind my back that it's such a shame that there are so many drunk people walking on the street in the morning. It hurts a bit hearing that, but still I am a witch and I do not harm, not even in thought.
    Life is for living, experiencing new things, exploring and most of all, making others smile. Although I am in pain, I keep smiling, teach yoga classes, teach magic, give grand open harvest celebrations and try to get as old as I can get. I love, I live, I dance and give. I inspire and create and every step of the way leaves a piece of me behind that gives others a bit of inspiration and joy.
    I am glad that you share the same creativity and witchy energy with the world.
    Being a witch helps
    Brightest Blessings
    from Aellora (from the Netherlands)

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    1. That sounds incredibly difficult to manage! I'm so glad to hear that you're making the very best of a potentially negative situation. I don't think I've ever been in a situation where my choice to be a witch has been "blamed" on my illness, and it's so disappointing to hear that others have done that to you. Shame on them! That being said, you sound like a very positive and strong individual to have endured so much. Sending you positive vibrations and happy thoughts from the US!

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  8. I've just discovered you, and whilst it shouldn't you've just filled my heart with joy. I too have multiple autoimmune diseases which I have been doing battle with for the last 30 years, and in that time I've heard and tried it all. Unfortunately I'm now in a wheelchair, but perversely that has given me much more freedom and independence. Every word you have written I can identify with and my heart goes out to you younger people. Stay strong, try to stay positive and try to do something every day just for you and that makes your heart sing BB Sass in the UK

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  9. bless you all and you are in my thoughts i was diagnosed with sle lupus and fibro and have had epilepsy since i was 15 when i was 39 they found a birth defect a little late but it happens i deal with it im not kicking as high as i used to but im still going i try my best to smile and be happy there is one thing that bothers me though is they give you meds that has side effects and then they have to treat them i have even joked with my drs that if they keep giving me meds ill have my own drugstore but enough about me love your work and your attitude bless you for all that you do

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