Living with Rheumatoid Arthritis – when your disease changes how you look

There are many ways in which Rheumatoid Arthritis has changed my life. One of the most upsetting is when it changes the way I look, changes my face and body, changes my skin…and people make certain assumptions about me because of the way I look.

Weight gain

For example, weight gain.  The biological medication I currently take (Actemra) and the corticosteroids (prednisone) both cause weight gain.  A considerable weight gain.  I’m currently almost 20 kilograms over my ideal weight.

Because I also have Eosinophilic Esophagitis (EoE), I am living on a very restrictive diet, and I only eat somewhere between 500 and 1200 calories a day.

It should be impossible for me to gain weight, or even maintain this weight.  But when you take medication, all bets are off. I exercise as much as I can, but with the severity of my arthritis I can only exercise every other day (or less) and I can only do light exercise.  To lose weight, I would have to exercise much more intensively and frequently.  The exercise still does my joints and muscles good, but intensity is what counts when you’re trying to increase cardiovascular fitness, and reduce body fat.

So I’m stuck.  And because of the way I look, many people assume that I spend my life on the couch eating chocolate and pizza.  That I’m lazy and undisciplined.

I know I shouldn’t care, but the injustice of it all, and those assumptions, do get me down sometimes. I barely eat, yet I get treated like a glutton, who has no control over their appetite.  The truth is I have to be extremely disciplined and am not able to eat very many foods due to allergies and intolerances.  Cheating isn’t and option, yet even doctors and dietitian has accused me of lying on my food diary.

Not to mention, I don’t fit into most of my clothes. My entire wardrobe is made up of stretchy fabric. In part, this is because I don’t do fiddly buttons and zippers because I don’t have the hand strength and dexterity to deal with those, but also because my clothes need to expand.

In my teens and early twenties I had Anorexia Nervosa and Bulimia Nervosa, though I never binged and purged.  I purged when I had no choice but to eat food…when I was at a social function, or someone pressured me into eating.  While I have overcome those illnesses, I still hate the feeling of being overweight.  It causes psychological distress and it’s hard for me to NOT return to disordered eating patterns of my past.   I have no control over my weight, and that’s hard to accept.

Hair loss

For many years, the medications have been causing my hair to thin.  My ponytail last year was about a third of what it used to be before I started taking immunosuppressants.  Then my hair started breaking, and I had no choice but to cut it short.  I figured it would grow back, but it didn’t.  Each  strand will grow to about 2-3 inches long and then it break off, meaning my hair remained short without ever cutting it, and always looked ratty and dry.

I hate the way I look with short hair.  I like it shoulder length.  Partly because I’m a large build and carrying more weight than I should be, I like to have more feminine hair.  I feel ugly and butch with my spikey short hair.

I also used to hide behind my hair.  I’m shy and introverted, and a curtain of hair in front of my face was like a little security blanket.  Now I can’t do that anymore.  My fringe won’t even grow long enough to hide behind.

And then, yesterday, I started shedding.  Great clumps of hair came out in the shower.  It was very upsetting. Now I have a very large bald patch on my left side behind my ear, and more round patches are forming.

This might be a medication side effect, or it could be stress, or alopecia, another autoimmune disease.  It looks very much like alopecia, I went to my GP to check it with him.  He could run tests to be sure, but he advised me to just wait and see. Even if it IS alopecia areata, an autoimmune disease that attacks the hair follicles causing the hair to fall out, it usually grows back.  I have lost so much hair, and have so many bald patches, that I had to shave my hair this morning, with clippers.  It’s now about 1cm all over, except for the one very large bald patch behind my left ear, and the few smaller patches.

It doesn’t look pretty.

I’ll admit I was in tears shaving it all off, despite knowing I had no choice.  The Chicklet came in to help me, so I pretended I thought it looked pretty cool.  But it doesn’t.  I’m planning on dying it purple and making it look cool though…try to make it look like I did it on purpose, rather than the symptom of a disease.

I had to go out to the shops and I noticed people staring.  And to be fair, it’s pretty stare-worthy, so fair enough, take a quick look. But some people really STARE. Taking a good, long look.  And I’m not talking about little kids, either.  Grown adults gawking at me.  I try to smile back.

I’m afraid they think I have cancer, and I hate that feeling. I feel like a pretender.  The cashier was super nice to me and offered up a story about her friend who went through chemotherapy and lost all her hair, but it DID grow back, and grew back thick and curly and she loved it now.

I struggled with what to say. I should have said “No, I don’t have cancer.” But I was so taken aback, I just nodded and thanked her and mumbled something about hoping mine would go curly too.  And then I fairly ran out of there.

I’ll get used to it.

Hives

I have Chronic Urticaria, and Cholinergic Urticaria. What this means is I often break out in hives.  Most of these reactions are harmless, but they look pretty spectacular. My skin flushes bright red, and I get raised, red welts mostly on my torso and arms.  Again, people tend to stare, afraid I have something contagious.

Angioedema, facial swelling

My face, eyelids, lips and tongue swell regularly, mostly in the morning. As the day goes on I tend to look more ‘normal’.   It looks like I’m having a severe allergic reaction, and again, its looks quite spectacular some days. Other days it’s more mild.  Either way, I don’t recognise the face in the mirror and there is no treatment.  I don’t know what’s causing it, my immunologist says its autoimmune and all part of the allergic/autoimmune cluster of diseases I have.

Skin rashes

Sometimes my skin is very dry and scaly, other days I have odd rashes.  Other times I’m flushed red.  The worst time was when my whole body (except my face, thankfully) was covered in festy pustules.  They weeped and looked like little open wounds.  It took weeks for them to scab over (also gross) and finally heal, and a further few months for the scars to fade.  I wore long sleeves in summer, I couldn’t go to gym because I looked so festy, and it was very uncomfortable and itchy.

Subconjunctival Hemorrhage  (eye bleed)

These are burst blood vessels in the sclera (white part of the eye). They are painful, and usually harmless, but the bright red blood is striking, and can look quite horrible.  When you get them regularly, as I do, they are a sign of uncontrolled high blood pressure, so I have to monitor my blood pressure.  I find they often

happen after a very stressful event.  On average I get one every two or three weeks, and they take a few days for the blood to disperse and the eye to look normal again.

All of these things together mean that I look nothing like the person I was before I got sick.  Even two years ago I still looked like me, apart from the weight gain.  But now as more and more medication side effects and co-morbidities stack up, now I see a stranger in the mirror.

So what can I do about all of these things?

Not a lot.

For the weight gain, I watch what I eat. I count calories, and I don’t comfort eat or reward myself with food.  I exercise as much as my rheumatoid arthritis will allow.  I can’t seem to lose any weight, nor stop the steady gain, however.

For the hair loss, I’m going to shop for some cool hats and bandanas.  Wigs are incredibly expensive, so I don’t think I can justify that.

For the rashes, hives and other skin issues, I can cover them up sometimes, but in summer that’s difficult.  And as some of the hives are caused by heat, covering them up just makes them worse.

The angiodema, I can do absolutely nothing about.  Same with the subconjunctival hemorrhages.

The only real solution is to accept it.  To NOT allow my self esteem to be built on the way I look.

That’s not easy in the very appearance-based society we live in.  People subconsciously make judgements on what kind of person you are based on how you look.  And my current look would be associated with more negative connotations than positive.

But I have to remind myself that what other people think doesn’t matter.  And that I have other good qualities, to go for the cliché, its what’s on the inside that matters.

And the people who love me, really love me, don’t care about the way I look. They love me for me, and who I am not how I look.

And that’s the most important thing.