It feels like, with chronic illness, I’m always playing catch up to the “real world”. I tend to withdraw into myself when I have a flare or feel sick and then have to see what everyone else is up to. I often wonder if that’s doing me harm as a coping method. I don’t want to draw anyone else into me feeling bad, especially when I know it’ll go away, but I feel so highly isolated because of it and it causes worse depression symptoms. I’m not entirely certain how to handle this aspect of chronic illness. My attempts to thus far are proving to be fairly poor.
The online chronic illness community is a scary place to become a part of. At one end of the spectrum, there are legitimately ill people looking for community and to “be around” people who get it. The other end plays the sickness olympics, malingers, is over the top, or is pure MBI (Munchausen by Internet). It’s hard telling between the two so often.
For me, its allowed me to connect with others who are stuck homebound or exist with some of the same conditions I do, which has been absolutely amazing and a big help with the feelings of isolation and the feeling that no one in my immediate locale “gets it”, or have discussions with people about symptoms who have the same ones and can commiserate without feeling like one is whining.
But it’s also opened my eyes to what a problem MBI and the like are for patients like myself – it takes away resources and it also makes it harder to be taken seriously, even with history. It's maddening to me to watch it happen—to watch it affect my own care. It's also incredibly frustrating because some of these characters get better access to care, treatments, supplies, and aids that I’ve been struggling for by going through things the proper way.
Overall, I’ve mostly been dealing with health frustration as well as getting the ball rolling with some specialists that I’ve been waiting to see to determine if we can get me to stay stable longer term so I can get on with life, instead of being stuck living life as a patient.
I’m impatient with being a patient patient. I want fixes, or at least plans, instead of just bumbling around trying the same things over and over again. I think I’ve been very lucky with excellent doctors, but its time to start thinking outside of the box because the status quo isn’t where I’m happy staying. I’m learning to accept a lot of my limitations, and am finally ready to figure out new ways to do other things because I am accepting that my mobility isn’t what it used to be, and probably won’t be there again. And that’s okay.
We’ve passed the fight point for certain issues – now it’s the acceptance and integrating point of time. And that part…well, my goal is to make it fun or at least find enjoyment in discovering new things about my new normal.
Image credit: Author