There are a LOT of lists out there about autoimmune arthritis, and here is mine. These are 10 things I HATE about these diseases.
1. Random injured body parts. Do you have a wrist brace on one day, and an ankle brace on the next? You may have autoimmune arthritis! It tends to travel from area to area, just in case we weren’t paying attention! This lovely little trait lends itself to our lack of credibility when we feel bad, because after all – once a body part hurts, doesn’t it always? Holy cow, I hate this more than anything. I have had body parts hurt for years then randomly stop hurting. Sometimes it is not that consistent though. This morning my ankle hurt, but now it is my neck.
2. No 2 doctors say the same thing. Oh the state our care is in!!!!!!!! (Yes that was a lament!) Maybe part of the reason we cannot get good awareness out, is because the medical profession that treats us is insanely inconsistent! No two doctors have the same beliefs about autoimmune arthritis. Some doctors don’t even recognize organ involvement with RA or Sjogrens, or that people can and do DIE from these illnesses. This leads to so many roadblocks for patients, and ultimately contributes to an early death.
3. Everyone also has “achy knees”. (While mine do ache now, it isn’t my RA.) Yes you can have RA in the knees, but this seems to be the response we normally get as soon as someone zeros in on “arthritis”. The most common knee arthritis is Osteo, which is a totally separate thing. (Very painful and disabling, but different.) While well-meaning, this does get old after the first 100 times someone tells you this. I almost feel like I need to walk around with a brochure.
4. Never knowing how I will feel when I wake up. This is FANTASTIC when planning things like LIFE, said no one ever. Unfortunately, we all wake up with NO days. Autoimmuners tend to have many of those, making small things hard. Ever need food but can’t move? Better yet – get some autoimmune IBS with the inability to move. Not so fun, huh? I hate not knowing what I will be able to do the next day. Every event is always a “maybe”, and friends eventually stop calling. You can’t volunteer, because you are not reliable. Sucks.
5. Miracle cures that got rid of autoimmune arthritis in someone’s Uncle’s Roommate’s parakeet. YES! I actually heard that if you gather rhino hair by the light of the quarter moon, add it to rosehip tea, and chant in tongues – it will do absolutely nothing. This is not a disease we did anything to get, but more likely a genetic one. Yes there are environmental triggers that could be switched off, but most of those “cures” are hogwash or apply to osteo. Again, I know people try to help, but it does get old. If there was a cure – we would have done it. Everyone is different, so you should try something if you want, but there is no cure yet.
6. Feeling like I have Bird flu EVERYDAY, and going to work sick because I can never tell the difference.. Fevers, aches, stiffness, hot flashes, fatigue. No I don’t have bird flu, I have autoimmune arthritis. It makes you feel the exact same way, without having to purchase the pathogen! What a great deal! Many of us will not know if we have allergies, plague, or it is the arthritis being an arse. We are so used to “sucking it up”, that we just assume it is disease and keep chugging away! Sadly, what would knock most people off their feet, is just another day at the office.
7. Being searched at the airport EVERY TIME because of the insane amount of metal in your body. Feel like the bionic person, or are you being followed constantly by scrap metal collectors? Us autoimmuners usually have more fake body parts than most of Hollywood. Unfortunately for us, it means we get very intimate with TSA every time we want or need to travel. Those little cards the surgeons give you? USELESS. The best one was when I was asked if I could take my knee out for chemical testing. Beautiful TSA.
8. Being considered a junkie because a disease ate my bones and my body doesn’t make enough of its own pain killers to cope. I have had autoimmune arthritis for life, and it has been super destructive since I was in my teens. I am a granny now. If I need opiates, then I shouldn’t have to feel like I am doing something wrong. I also should not be punished for all those REAL junkies out there who are abusing their scripts. At some point, cannabis may not work anymore for me. (Hoping that never happens, this is awesome.) Isn’t this why we have these meds?
9. Walking like I am drunk because my feet suck. People have actually asked my tea totalling rear if I was drunk before. My feet don’t always work, so I wobble a LOT. Now I just answer “Clearly.” and stumble off.
10. Feeling like someone injected all my muscles with lead just for entertainment. This is my chronic fatigue. Muscles feel like they were injected with heavy metal and it take 4 times the amount of energy to complete tasks. CFS is not being sleepy. It is literally feeling like the undead. Mindless, immobile zombie. Hate it. Completely.
While there are many more things I hate about autoimmune arthritis, these are some I rarely see mentioned (except 1-10). Hopefully we can work together to change this and gain some legitimacy in our sickness.