I HATE IT WHEN...

What do you say to someone who tells you "At least you're not dying". I HATE IT WHEN PEOPLE SAY THESE THINGS TO ME!! I am incurable and my life expectancy has been shortened by these autoimmune diseases that are slowly destroying me on the inside. Here are a few more things I wish people would stop saying to me:

1) Be positive-I do my very best to be positive every single day whether I can crawl my ass out of bed or not. I try and sometimes fail but at least I am not giving up.

2) Get out and exercise-Seriously? Sometimes I don't have the balance to get from my bed to the bathroom without falling over or I'm incapable of wiping my own ass because it hurts to move my arm in the position in needs to be in.

3) Change your diet-While I have gone through some dietary changes it's hard to totally eat properly especially when you can't stand up long enough to prepare a meal. Not to mention that food is so damn expensive and when you don't have the income to eat expensively healthy you do the best with what you have.

4) At least you don't have cancer-While cancer is a horrible disease and has taken many people that I love it isn't necessarily going to kill you immediately either. Many people go into remission for many years and live normal long lives. It's the same with people who are diagnosed with autoimmune diseases, it's a roll of the dice.

5) Things could be worse-The only thing I can think of that would be worse is if I were 6-8 feet under and even then it wouldn't be worse for me but for everyone else that loves and cares about me. NO...I do not wish this nor am I suicidal but what could be any worse than living each day in constant pain, dizziness, nauseated, headaches, numbness, being clumsy and not on purpose, not being able to walk at times. The list goes on but I won't.

6) I know how you feel, I'm tired too-NO...there is a difference between being tired and fatigue. LOOK IT UP!!

I just wish people would think and educate themselves sometimes before they speak.

OPEN LETTER TO THOSE WITHOUT AN AUTOIMMUNE DISEASE

Having an autoimmune disease means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about autoimmune diseases and their effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that having an autoimmune disease doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.

Please understand that the effects of autoimmune diseases are variable. It's quite possible (for me, it's common) that one day I am able to walk to the bathroom and back, while the next day I'll have trouble sitting up. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you.

Similarly, my autoimmune diseases may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Autoimmune diseases may cause a secondary/reactive symptom like vertigo, nauseousness or tremors. Telling me that I need some fresh air and exercise is not helpful and not appreciated - if I can do it I will.

Please understand that if I say I have to sit down/lie down/take these pills or shots now, that I have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. Autoimmune diseases do not forgive their victims easily.

Please understand that I can't spend all of my energy trying to get well from my incurable autoimmune diseases. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. The important part of having autoimmune diseases/disabilities is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with an autoimmune disease/disability.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different autoimmune diseases and disabilities. If something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

Please understand that getting better from an autoimmune disease doesn't mean being cured and doing all the things I did before, getting better from an autoimmune disease might not happen at all. People with autoimmune diseases have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

Please understand that my grief is not linear, this monster disease is not linear either. I will go through times of anger, depression, isolation, denial, etc...Please be patient with me.

I depend on you - people who are able-bodied - for many things.

BUCHANAN (n.d), "But most importantly, I need you to understand me".

This is an adaptation of the original Open Letter: BUCHANAN, R. (n.d). OPEN LETTER TO THOSE WITHOUT A CHRONIC ILLNESS. Retrieved from http://notdoneliving.net/openletter/id

ACCEPTANCE & POSITIVITY

I have been mulling over this disease that I have and while still not quite excepting of it I have succumbed to the fact that it is a part of me now and will also define me. I am still very much who I was before this hit me but with a twist. I was born with medical issues and had challenges all my life so why not this too!

I visit and talk with my doctors more than I do my family members and friends now. My social life is in the clinics and ER and what is really scary is people know me by name! I really don't get out much because I never feel well (not the normal person's "I don't feel well" either) and I'm afraid I'm going to fall out in public, I've had that happen once before.

I have been trying to think about ways that this incurable illness has been good for me, which is really hard to do. So here we go...

1) I have made some incredible friends and even though we can't hang out in the normal sense of "Hanging out" we share our illness, sadness, pains and small victories together.

2) I have a few family members & friends that I have had for many many moons that are very supportive and I don't know what I would do without them. With their help I have managed to pay some bills, do laundry and get much needed essentials (Toilet paper 💩)

3) Learning new words like "Spoonies", "Rheumy", what SARDS stands for, and so much more. My vocabulary has grown in ways I didn't think was possible and who says you can't teach an old dog new tricks! LOL!

4) Even though it makes me feel horrible at times because I feel like I should be doing more to contribute to the household "I LOVE NAPPING"! I don't need an excuse anymore to do it because when my body says "STOP IT" I have to listen or it will make me pay for it later.

5) I have never been one to like "dressing up", clothes are so restrictive and uncomfortable. Now I can wear comfy things and not feel horrible about it and if someone doesn't like it, to bad! Which reminds me, I NEED MORE LOUNGE PANTS & HOODIES 😊

That is all I can think of right now off the top of my head. I know most people think that it must me nice to not have to do anything all day but what you do not understand is that I have to "FIGHT" my own body everyday all day, 24/7 365 and there is no end to it. There is no remission for me, only a glimpse of relief once in awhile before the ugly monster rears it's ugly head again.

I am also doing my very best to work from home, some days I can't, some days I can only work an hour or two and some days I can complete a whole 4-5 hour shift. I take the small victories when I can get them and live to fight another day on the days I don't.

I have no idea what my future holds for me and that is ok, it will be a surprise everyday. Sometimes good and sometimes bad, can not have one without the other. I will do my best, that is all I can commit to.