The Emotional Toll of Chronic Debilitating Illness

As is probably evidenced by my blog, I feel the emotional toll of being chronically sick is immense, and the longer I am sick, the more I struggle to cope with it. This week has been really tough in that respect.

One of my biggest issues is with my living situation. At my age, I really need my own space. I have my bedroom here, but it's not as if it's really mine. It doesn't 'belong' to me; as I don't own or rent the property. I felt this feeling increasing from late 20s to present. I have been unable to do anything about it.

There is the dichotomy - between feeling grateful and feeling guilty. I feel guilty that I am so distressed by my inability to have my own place, because I know I could be in a much worse situation (totally homeless or living in a third world country, and sick). I am grateful for what I do have; I always have been, and I give thanks to the Universe for this and many other blessings. Yet, the crux of this issue is that despite that, I know that with my education and my background, take away the sickness and I would have been in 'that place' that I crave. I would have most likely had a job, a good one, and earnt enough to rent or buy a place.

This knowledge coupled with feelings of being trapped, stuck and powerless, lead to total frustration. Not only does one feel frustrated and sometimes circumstantially depressed, but the emotional impact that this situation has on one can become leverage for those around them or those they come into contact with. For example, the precarious nature of one's dependence, becomes a 'verbal bashing' tool during conflicts or a bartering tool to manipulate the sick person with. That is not right at all.

In my case, while I know I am doing nothing wrong by not working, and that by not working I am no lesser a human being than others who are well enough to work, I am constantly coming into contact with people who do not uphold my beliefs. I am saddened by the way in which they view the world and 'measure' (or judge) other people. Yet, when most people subscribe to this viewpoint - that work/career, money and house make you and give you power to state your view and to garner respect, it is hard not to be affected by it too. I feel the loss of respect and lack of power. I do not command either, despite learning to be more assertive. Side note - except from my few close, special friends who actually see past all that to 'me' - the person with or without illness... my essence.

All the above troubles me. I feel pretty tortured by it lately. I have never wanted to be a person who wants to run away or to leave a life behind, but I increasingly feel like that. I want to have the freedom to be myself, to have respect, and safety of mind and person. The longer I have to endure being stuck, the more angry and frustrated I am becoming, and I hate that because it's not 'me'.

I realised that perhaps the only way I will ever achieve what I want, is to continue to pursue self employment coupled with trying to get myself AWAP. It's hard to accept that because, by its nature M.E. is precarious and relying on oneself for the financial income to move out of the family home, is tough... You never know how able you will be from one day to the next, so planning to earn a certain amount of money is very difficult. I need a more reliable and higher baseline - so that I can say: yes, I can do x amount of work a week. I am concentrating on this now. I am my own best hope.