There are times having sarcoidosis doesn’t phase me much. I am able to function with relative easy on every level but there also times, more than not actually, when having sarcoidosis is difficult on every level. My body doesn’t work the way I want it to. I gasp for air. My nerves burn. I crack and ache and find myself feverish for no apparent reason. My body is slow and sluggish and my brain is cob webbed and dusty. I sometimes feel like every step I take is like trying to walk through thigh high mud. I take a lot of medication and I can’t eat what I want. I don’t work anymore because my body can’t handle the stress and my brain can’t handle the demand to think.
All of that is bad enough, right? Unpleasant to be sure but, the thing that sometimes makes having sarcoidosis the absolute worst is something far harder to talk about than a broken body and a mixed up mind. It’s humbling to admit but the hardest part about having sarcoidosis has nothing to do with the physical or mental challenges. It’s dealing with the emotional ones and for me more specifically, it is learning to deal with the loneliness that comes with having a chronic condition. There is something about being perpetually unwell in unpredictable ways that is beyond explanation. It’s a private kind of hell that no one else understands. As hard as I try to fight for my life and I do fight for it, there is a part of me that knows I am not nor will I ever be truly me again. I lack confidence in ways I never thought possible because I just don’t know when my body will cooperate and when it won’t.
The bottomline for me is that now that I have this stupid disease, I am alone a lot, partly because I no longer work but also because there is a strange comfort it in now. If I’m not around other people, then I don’t have to explain what’s wrong with me when I can’t find the right words and forget my train of thought. I don’t have be embarrassed when my lungs decide not to work correctly and I begin to gag and wheeze and gasp for air. I’m always offered a well meaning but unhelpful glass of water by helpless on lookers when this happens. If I am just alone then I don’t have to think of a good excuse to leave the gathering early much to the dismay of the host. There is an ease in just being on my own and generally I do like my own company.
There is also a price to pay for being alone a lot and that price cuts to the core of me. It is the danger of crossing over from alone time into the loneliness. There is a feeling of complete inadequacy in feeling lonely for me. There is a feeling of utter failure and there is a deep and quietly all consuming feeling of fear in feeling lonely for me. These are the challenges I find the hardest to face for having sarcoidosis. I try to balance my need to be alone against getting lonely but I admit, I am not always successful. In fact, I fail more than I succeed when it comes to this internal battle because loneliness has a way of creeping up on me and then blind siding me with profound sadness that sometimes I can’t even explain until I realize that I have once again crossed the line from much needed and often healing time on my own into the pitiful place of self inflicted isolation.
I feel a sense of shame for feeling lonely sometimes. I feel deeply deficient in some way for being lonely. Successful people should not feel this way and I have generally believed myself to be a successful and fortunate person. I am usually able to overcome life’s obstacles. I am not entirely able to tackle this one though because time and time again, it sneaks up and deep unhappy solitude takes hold of me. I’ve been in that uncomfortable place of darkness for awhile now again. This time I am shedding light on it. I am writing about it, putting it out there and laying myself bare. I am handling this bout of oppressive isolation differently. I am not going to feel shame about it. I am going to accept it for what it is. It’s just another symptom of life with a chronic health condition. Nothing more. I am going to publicly acknowledge my loneliness this time and as with all other symptoms and hardships of this disease, I am going to do what I always do. I am going to fight. I am going to overcome it. I am going to find balance again. It’s time to move away from this dark place and back into the light.