As I have mentioned before, I have a fused neck, symptoms of M.E., a pinned shoulder and degenerative spinal condition. I am also in constant pain. What I have learnt from being ill/disabled is that you are seen (or unseen) as invisible, unintelligent and a drain on society.
Not All Disabilities are visible or defined by age: I do not look disabled (just small). The main comments I get (and this includes from vaunted medical professionals) relate to age: You are to young to be this ill and therefore shouldn't use certain services etc. Especially during COVID certain services just didn’t take into account people my age or with my health issues. You can’t see that I am in pain, but I am. Just like people with other invisible disabilities my disabilities are dismissed or minimised because they cannot all be seen.
There is a need to be competitive: I have extreme fatigue, for example, certain people are at pains to tell me that they get tired to sometimes, so I should either take a nap or push through it. If combating fatigue was that easy there would be no need for most of the M.E. services, we could fix our selves!
"I'm sure if you really tried you do ...". Yes I really want to live a restricted lifestyle, I should just try harder. I and my physio know exactly what I can do, the one time I tried to push myself I smashed my shoulder. Restrictions are there for a reason.
People can be tactless, insensitive and feel they have the right or knowledge to comment about every aspect of your life. You almost become public property, asked about all aspects of your life then proffering their (unwanted) opinion.
Someone always wants/envy my life. Apparently I stay at home all day, potter about and relax. It must be fantastic. In reality I would swap in an instant and you would hate my life. I miss human interaction, working, going out. When you have a long term illness friends drop off, busy with their own lives. I exist in an insulated boring bubble!
To combat all of the above, I always try to look for the positives, no matter how miserable I am feeling, but in a perfect world I wouldn't need to!
your selection of illnesses match my other halfs plus he has one or two extras he looks perfectly fine sat still and people have tons of helpful comments , theyve always had a relative whos been cured by this and that . supplements are the answer we have lost family and friends because we are scroungers its just endless , He would swap bodies if he could , the last helpful remark was from a medical professional ...dont worry once your spine collapses we will sever the nerves and you wont have the pain
ReplyDeleteSo sorry your husband, and you, have to go through this. People are self absorbed and tactless. Everyone should be forced to live for a while in our shoes, then they would understand what we go through every day, Best wishes, Susan
DeleteSo sorry your husband, and you, have to go through this. People are self absorbed and tactless. Best wishes, Susan
ReplyDelete