So, this week has sucked. I had 3 scheduled doctor’s appointments and I made 0 of them. I had to reschedule my Dermatology appointment because I woke up feeling like I’d just been hit by a bus. Somehow, my dumbass missed my Urology appointment EVEN THOUGH that shit was input properly in both my phones calendar, and the dry erase one in my office area. I was so pissed. Thanks brain fog 🙄. My appointment with my PCP needed to be rescheduled because my time management skills are none existent. On top of all that, I’ve been in a flare all week, so I’ve been a miserable bitch. I don’t know if I’ve ever explained what being ‘in a flare’ means, so I’ll break it down really quick. Us spoonies use the terminology to explain a period (days/weeks/months) in which our respective health issues and symptoms are causing a usual amount of discomfort. On a ‘normal’ day, after the meds have kicked in, most of my symptoms aren’t bad enough to put a pause on my day to day routine. When I’m in a flare, everything hurts, I’m ten times as tired as I usually am, nothing makes the pain go away, and I can be nightmarish to be around. Since everyone has their own ‘version’ of MCTD and other diseases in conjunction with the MCTD, symptoms, severity, and length vary. I usually get extremely fatigued, swollen to all hell, and have very painful muscles. Being a super bitch during flares is inevitable when I haven’t slept well and pain in a lot of pain. Most of my flares last a few weeks which isn’t that bad. Sounds like a good time huh? Moving on.
So, I wrote a FB post yesterday after seeing that on Twitter, the hashtag ‘invisible illnesses were trending. I was pretty pissed. A big part of me felt protective of the subject and didn’t want people to tarnish the term. What I mean when I say that, is that because some many people dismiss the concept, I didn’t want it thrust into the spotlight, so it can further be scrutinized. If you haven’t or do have an invisible illness, you’ve experienced the dismissal and accusations from friends/family/doctors etc. This is the post that shared:
“Today, the hashtag invisible illness is trending. Why is just now being talked about? There are millions upon millions of people all over the world that live with an ‘invisible’ illness. I know I do. On a good day, you wouldn’t know I was sick, unless you paid attention to the slight tremor in my hands. You’d never know that my body is waging a war on itself. You’d never know that I choke down medication 4 times a day, just to feel ok. You’d never know that I’m a shell of my former self. I talk about my disease. Many people don’t. They fear that they’ll be dismissed or told that they’re exaggerating. They avoid going to seek medical treatment because they’ve been told that they’re faking their symptoms and have no disease. This needs to stop. Science needs to step up and add invisible illnesses to the list of diseases that are worth researching. Doctors need to be quiet and listen. People need to learn empathy and understand that you can’t tell a person’s journey based on appearances. Those of us living with invisible illnesses need to have confidence in society, enough so, to talk about being unwell, so maybe one day we won’t be.”
That’s only a snippet of how I feel about the treatment of those with invisible illnesses. I have very few friends and family that have invisible illnesses. I can count on two hands the number, so that tells you how many people I can relate to about this topic. Having an illness that doesn’t have many physical manifestations is hard enough, add the rarity of the disease into the mix, and it’s a mess. Not only do you have to battle with people taking you seriously, but now you have to educate those people on your disease. I’ve had to explain my disease to quite a few doctors, which is annoying, but understandable. I don’t expect everyone with an MD to know what MCTD is, especially when it’s not within the scope of their practice. I’ve always been willing to educate family and friends about my disease. Hell, I never heard of it until I had a tentative diagnosis.
As I mentioned in my post, I’m open about disease and the effect it’s had on my life; few people are. I’ve been a part of an online MCTD support group for a few years and I thank God for the people on there. Quite a few members have stated that the group forum is the only place they feel comfortable discussing the details of their disease. The group is small, about 6,000 people around the world. It’s an environment where we can be open and honest with one another because there’s no judgement. We’re all in the fight together and there’s a huge sense of community. I’ve learned a great deal from these men and women and I don’t think I would be able to navigate this disease as well as I do, if not for them. When one of is discusses a situation in which someone close to them, is unable to relate to their circumstance. A phrase I typically use in response is, “You can’t truly explain the war to someone who isn’t out there in the trenches with you”. I stand by that statement whole heartedly. ‘Non-spoonies’ don’t quite understand what it’s like to walk in the shoes of someone like us. That’s a huge reason why I started this blog in the first place. I started it to educate people on what my day to day life is like living with MCTD; it quickly became a therapeutic tool as well. I’m fortunate to have been given the opportunity to share my story and I’ve never once taken that for granted. Thank you to those of you that keep up with this blog and for being supportive of me during this journey. 💖 Ok I’m done venting.
As usual, I’ll update if something changes. Only one thing left to do: Keep Calm and Autoimmune On 🤘