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 going to bars, parties, malls, etc.). I have lost boyfriends, who have seen me as 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, it’s 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. If people aren’t listening to detailed information about the illness, break it down for them and educate them on how you are feeling that day or how you tend to feel on a day where you are struggling more because of your illness.
- Eliminate as many negative influences in your life as possible. When people make negative comments or diminish your experiences it can impact your mental health, which could then impact your physical health even more.
- Do NOT start holding grudges against the people close to you. I did this as a young person, and with doing so many relationships ended.
- Something as simple as the statement, “I appreciate your input/concern” can dissolve a discussion with someone that may be giving input without knowing all the facts.
- 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 or someone that will listen without feeling the need to give input. Take a bubble bath. Unwind with 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 do is to learn how to lessen our stress in such trying situations.
I have faith in you all (and even some left over for myself!)
Originally published on 08/26/2010
Updated by Fight Like A Girl on 12/20/2020
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.