Today my feelings were hurt as a result of another person’s actions towards my illnesses. This is fairly common in my world, much to my dismay.
You see…a large portion of the common public still view fibromyalgia and chronic fatigue syndrome as forms of mental distress. Some have been known to call them the ‘yuppie flu.’ There are still medical practitioners behind on the research who believe similar things, which has led me to spend most of my life with a psychiatrist, with absolutely no pain management.
I have lost friends as a result of not being able to act like a ‘normal’ 23 year old female (which is apparently bars, partying, malls, and the like? – I probably just need new friends haha). I have lost boyfriends, who have determined I am too high maintenance. I have family who choose not to speak of the illnesses, and instead just look right through me.
I am a firm believer in harnessing your demons, and fibromyalgia, myofascial pain syndrome, and ME/CFS haunt me every single day. I have only managed to generate any feeling of power over these illnesses by talking about them, with the hopes that I can potentially raise some kind of awareness.
If there is one thing I have noticed about my fellow Fibromyalgia and ME/CFS sufferers is that they all have some members in their circle of family and friends who either do not believe that these are real illnesses as they are invisible, or do not believe whatever approach they are taking is the right one (with these thoughts usually delivered forcefully, and not just as a casual recommendation). As a result, I have decided to try and come up with some ways that we can lessen the hurt that comes with this type of negativity.
- Recognize that those in your life who are not chronically ill are never going to be able to fully empathize with you. They may be sympathetic towards your cause, but the concept is still going to be foreign to them. Try to educate those close to you as best as you can, and as for others, let their nasty comments roll off of your back. If you were to put yourself in their shoes, you probably wouldn’t know what to say either.
- Eliminate as many negative influences in your life as possible. Such comments hurt mental health, which will only naturally hurt physical health even more.
- Do NOT start holding grudges against the people close to you. I did this as a young person, and let’s just say it was the end of many a relationship!
- Something as simple as the statement “thanks for you concern,” whether said sarcastically or truthfully, will often dissolve the situation.
- Most of all, make sure that you feel centered with your illness(es), through research, trial and error, and a healthy lifestyle. This will make it easier to stand up for yourself in a rough spot.
Make sure to take extra special care of yourself after you are hurt by other people’s reactions to your invisible illness. Talk (or rant!) to someone who is in a similar situation as yourself [this is why I love Twitter!!]. Take a bubble bath. Veg out in front of a great television show. Do some light exercise. Let the frustration lift from your body.
Stress is a major trigger for nearly every illness in existence. One of the most important things we can ever aim to learn is to lessen our stress in such trying situations.
I have faith in you all (and even some left over for myself!!
xoxo,
Annie
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
We all have naysayers in our circles of family and friends. The great thing about the internet, is you can find a community of folks who DO understand what you are going through, because they’re dealing with many of the same issues. Til I started blogging last fall, I had no idea there were so many caring, compassionate, and helpful folks out there.
Great post, Annie!
Well said, Annie!
This is great advice Annie. Even those around me who do understand sometimes slip into naysaying when I don’t meet their expectations. This is a really tough subject…
Fortunately I have found you and lot of other fab people living with FM/ME/CFS via social media who make me feel loved and supported all the time. 🙂
Great post, Annie!
There are these people everywhere. My own parents included. Even my sister, who understands best of my friends and family, often gets frustrated when I can’t do things she needs/wants me to do. Sometimes the only thing that gets me through the day is that there is a community on the internet filled with lovely people like you who remind me I’m not alone in this fight.
Thanks for reminding me that I’m not alone in this battle.
xoxo
THANK YOU! I cannot tell you how grateful I am you shared your story, that I found this group…
I had a serious fall out in my family a few years before I was diagnosed and treated for Thyroid cancer, CF, polycystic ovaries and arthritis and degenerative disc disease in my back. Not one member of my family believed I was ill since they couldn’t see what was wrong. I looked perfectly healthy to them.
Sadly, it took the cancer, 3 surgeries and treatments for them to realize that I really was sick- but we had lost a little over 2 years of family time. I couldn’t be around them because the ignorance, accusations (they thought I was ‘faking’ or ‘making myself sick’ and disapproved that I took pain medication for my back & PCS). My fiance left me because he didn’t ‘care anymore about all the bull $h!t’ I was dealing with. He also left behind our two children.
I spent the last 13 years going from doctor to doctor until I got out of the ‘it’s all in your head’ box they had put me in. Countless therapists, different diagnosis’, anti-depressants and even one psychiatrist who laughed at me when I suggested my thyroid was not working right. I finally found a doctor who heard me, didn’t call me ‘hysterical’ or ‘depressed’ and we got to work finding out what was wrong, specialists who could help.
Lesson? Let it go…heal yourself, the people who love you will come through for you in the end and don’t ever stop fighting for good health and quality care.
Hi Annie, thank you for reminding me that I’m not alone!!!!!
I am so happy to have found this site and other people that understand what we are going through. My sister in law and I both have it, I will be sharing this with her. Great Post, Thank you!
Thank you everyone! Especially Celestine for sharing such an absolutely heartbreaking story. Sadly, this is the way most of our illnesses affect those close to us. Sharing our stories is what will heal our souls 🙂
The picture you put in at the end of your post – I really relate to that. If I can graduate from high school, I will have proved everyone wrong. I’m sick of hearing that I can’t go to school, or I shouldn’t, or it’s damaging my health. I know it’s making me worse every day, but I want that certificate, and I want to show everyone I can do this, even if it almost kills me!
I’m not a lot younger than you, I’m 19, and I hold grudges against some people.
When a girl at school was bullying me saying things like “You’re crazy, ME/CFS is all in your head, and you just want the attention.” or “There should be special schools for people like you, so no one has to listen to anyone talk about illnesses”, etc. I ignored her, and put it down to jealousy, (I’d just appeared in a feature article all over the web and in national and statewide newspapers) mental instability and immaturity. (She was hospitalised, and not just for an invisible problem; I was in the adolescent ward, too, sadly.) I still ignored her when I met her at my one year reunion. Some people need to let go.
But my family, who sympathise with two of my cousins who have muscular dystrophy, but hasn’t affected either of them yet, except for pain sometimes, and an odd gait. My illness, however, is ignored, or likened to being “tired” after “mowing a lawn”/”babysitting grandchildren,” etc. My extended family don’t visit when I’m in hospital, they don’t call, unless it’s to find out how me and my brother are; did I get an A on my mid-year report? Has my brother won an award for sport? But mention illness, even if it’s a cold my brother has, and suddenly the family member has to go or wants to talk about the weather. Anything to escape hearing about how I really am. I hold grudges for those reasons. It’s not difficult to drop in to a hospital, just to say hi, bring a balloon, or if you’re “too busy”, send flowers, call at least once a week. I think some people just want to be there and hear about the good times. If there aren’t any, they’re not interested.
I try not to stress, but it’s so difficult! That was a brilliant post, Annie. =) Any tips on how NOT to hold grudges/let go of them?
Haha, I can try to work on something to let go of grudges!
Keep posting stuff like this i really like it
I really enjoyed this post, Annie. 🙂 I’m currently at the point where I can do something lowkey for about an hour before I crash, onve every couple of weeks. I haven’t seen my aunt and uncle for over a year..they refuse to text or email because its not their thing (though they do some of it with other people, they’re just opting not to do it with me even though I’ve explained how much more energy talking takes…energy I don’t currently have). Its frustrating. I’ve written letters, emails, but I basically gave up a year ago because they wouldn’t contact me back. I hear through the grapevine they really want to talk to me, and are hurt I’m not calling. Theres a myriad of reasons that I don’t spend the little energy I have, on them. they believe my illness is psychological and I’m opting not to get better, and feel I should be pushing myself. When thats all I ever do..push myself..and I know I have to stop, so I need to be around people that are encouraging me to go against my nature and rest, because its what I need. The last thing I need is to be around people that are giving me a hard time for my lack of accomplishments. If they would accept my needs, it would require less energy to be around them because, as you know, standing up for yourself and going against the grain requires energy. So my relationship with them is crappy.
I’ve discovered who my true friends are, and there aren’t many, but I’m really okay with that because I don’t have the energy/time to maintain more than a couple relationships anyway. The family stuff I still choke on. I’m taking this crash timeto focus on myself again and work on not worrying about what anybody else thinks or says. I need to figure my own stuff out, outside of a relationship, outside of anyone that adds pressure or stress to my life. I’m going to take what you said you said about grudges in mind..I’m still admittedly holding a few.
Take care!
I completely have had the same thing it drives me nuts. thanks for your tips and your honesty!! and yes i am thinking new friends too. its very frustrating, the comments over my gayness are actually less bad than over my illness. Its like the biggest tabbo and embarrassment. but for me i have to live with my wheelchair and thats that. if people would rather not bother with the Hassle of taking me then thats thewir problem. so weird huh>?