“Chronic means chronic, not ‘until I try your suggestion’”
Hi, Facebook!
I’m in multiple Facebook Groups and follow accounts geared toward autoimmune disorders. (Special shoutouts to MCTD Facebook Group https://www.facebook.com/groups/mctdsupport/ and Rare Visibility on Instagram: https://www.instagram.com/rarevisibility/).
This post “Chronic means chronic, not ‘until I try your suggestion’” came at the perfect time, just as I begin my blog. The post continues saying “If there were some magic, easy solution to cure this illness, we wouldn’t be having this conversation.”
I really have not posted many tips or things that have improved my quality of life yet.
Sometimes it is almost disheartening to see how much you have changed your life to mediate your symptoms. My diet, sleep schedule, how I socialize, and mindfulness practices so I don’t get flare-ups from seeing an unanswered email.
These are also things you have probably seen on social media as tips and tricks to help. You view these things as normal practices for everyone or me falling victim to mainstream content.
There's always that one person.
There is nothing that makes my teeth grind more than people telling me to try anything. “Try running.” “Try drinking more coffee.” “Force yourself to stay up longer.” “Try to push yourself.” Having a rare autoimmune disorder was not on my bingo card of life. It has been difficult to relate to people who don’t have to go through this. The worst is having someone say “so what’s wrong now?”
I’ve been reading “The Body Keeps the Score.” The author mentioned how one of his patients mentioned that the more others make comments about being “more reasonable,” the worse the patient feels about it and reconfirms their theory of being “alone” in the world. That they are the only individuals who experienced this.
The prevalence of these autoimmune disorders and chronic illnesses are increasing. Though unsettling, the statistics show that we are not alone. I believe this will help us band together and form a collective to help support each other through this.
Some suggestions for dealing with "suggestions"
This may be controversial because I’m giving some tips on what I do to help ease any negative emotions when getting into these situations.
I remind myself that not everyone has dealt with the autoimmune disease. They were not diagnosed with one or have had someone close to be diagnosed with them.
I tell myself that these people have an interest in my life and their thoughts come from a positive space. My boyfriend once said he likes to give suggestions because he just wants me to be happy.
If it came from a place of me venting about symptoms, I preface the conversation that I just need to vent. The way I have to tell my mom this every time I bring up my digestion.
With friends and family, I am closest to, I keep my boundary by letting them know how I really feel about the comment. I thank them for whatever unsolicited advice they give me but remind them that this is something that may be ongoing.
By now, my closest people know what I’m dealing with (I also may or may not have sent them multiple Mayo Clinic and Cleveland Clinic posts about MCTD). I think this information goes a long way in growing together in this process and providing adequate support.
Honestly, if it’s an acquaintance or a distant friend, I will go along with the suggestion just to hear their thoughts. Again, it may come from a place of interest and I may not feel the need to share my prognosis. I write off their need to provide a suggestion as a form of ignorance at times, too. (I don't know how loud and proud I should be about that, lol).
This is not to say I have not gotten fed up with people chiming in their two cents. This is the last thing anyone needs to hear on a bad day.
Your blog, though?
For the status of “suggestions” in this blog... I want to remind you that these are things that have worked for me. My symptoms include extreme fatigue, body stiffness, joint pain, brain fog, insomnia, and heartburn daily. I also have migraines about twice a month. The tips and tricks I list here are things that work for me.
Take what you resonate with, and leave what you do not. : )
van der Kolk, B. A. (2014). The body keeps the score: Brain, mind, and body in the healing of trauma. Viking.
