I have suffered from both external and internal guilt as a side effect of PH. I feel such incredible guilt, although the feeling has faded as the years have gone by. I sometimes still find myself plagued by it. It is difficult to see how such a catastrophic that I had such little control over runs down hill. It effects so many other parts of my world.
I feel guilty because my life isn't the only life effected by all of this. Sometimes I find myself saying "sorry, I am sick." Apologizing for something that I have very little control of. Saying sorry, even though I know these situations will happen again. Unable to work, I still live at home and rely on my parents. I am sure they planned to retire soon, and I feel like I messed up their golden years because my golden years currently overlap with theirs.
Me living at home is also expensive for my parents. There are obvious medical costs, plus my crazy expensive food (because I eat mostly fresh and organic foods.) I see how my side effects so deeply impact them in various ways from socially to their well being. I hate that something that happened randomly hurts us all so deeply. I try to handle this human experience as graciously as possible, but it isn't always possible to sugar coat things. A positive attitude will help get you through the day, but it won't change the fact that I struggle going up a flight of stairs. I also think that you have to admit when things suck. It wouldn't be healthy to ignore your challenges, or to try and dress up a wolf as unicorn and hope that it doesn't eat you.
I feel guilty because the life I planned with my boyfriend is now very different. Sometimes I feel like I have very little to offer to the relationship. On paper, I feel like I kind of sound like a lemon. "Free to a good home: 28 year old girl-woman who can't drive, work or breathe on her own (for certain basic activities.) Very expensive special diet. Comes with Boston Terrier that you must also take care of." Hopefully from that line you can tell that I have a sense of humor, which is one of my selling points, beside my really cute dog.
Spencer has stuck by my side through my diagnosis, which I am so grateful for. (But it also has made me feel guilty.) He has so much life a head of him, and I don't want to stop him from following his dreams. This experience has really shown me what is valuable. Through all of this proverbial crap I have become a more supportive and grounded person. However, that doesn't change the fact that I probably won't have biological children. Or the fact that I am not sure if I will be comfortable adopting because a few doctors gave me the life expectancy of a hamster at the start of all this. I worry that my situation will effect what jobs he will want. I don't want him to take the job with benefits over a dream job because of me. I don't want him to have to take a high paying job that he hates because I cannot work. We were supposed to be partners. Equal partners with different strengths and weaknesses to balance each other out. I am strong as hell- but are these new found strengths valuable for "real life?" I feel like I am not apart of real life, but a mere by stander watching from the outside. I know he doesn't view me as an invaluable counterpart, but sometimes I wonder what I truly can contribute to our relationship.
I also feel a lot of internal guilt. At the very beginning of all of this I blamed myself for getting sick.
"I must have done something wrong."
"Healthy people don't get sick."
"Was my diet really that bad?"
"Did I really stress that much more than my peers?"
"What did I do so differently than other people my age that this happened?"
"Am I being punished? Did I get sick because I am a bad person?"
Those are some of the thoughts that I really struggled with. I felt as if that I must have done something wrong to get sick, especially because I was diagnosed with a rare disease. Overtime I have tried to accept that the perfect storm must have been going on in my body that allowed the disease to develop. I didn't do anything to "deserve" this, it just happened.
I believe that holding on to and hoarding negative emotions are not healthy. I have made progress releasing a lot of the guilt that I feel over being sick. Obviously life happens, and the feelings bubble up from time to time. However, it is important to handle those feelings appropriately. I accept that I didn't do anything wrong to get sick. There was probably nothing that I could have done to prevent it from happening.
I also accept that my parents love me so deeply and unconditionally. My parents helping me, taking care of me and going well above and beyond the call of parents of a 28 year old child are all an act of love. I know that them taking care of me, and supporting me isn't even a question, hesitation or thought for them. They want to take care of me. I know that they would want me to feel loved through their actions, and not like a burden.
I also know that Spencer loves me, and rarely sees the disease. He understands that although being sick dictates very important aspects of my life, the disease isn't who I am. He supports me through all of this, and sees who I am truly am- which is why he sees me as an equal and valuable counterpart to the relationship. I know that his companionship is something that he chooses to offer me, and he that this is another act of love.
It has taken me a few years to slowly release all of the guilt, and to slowly accept all of the love that others want to give me. I've learned that being sick isn't the time to start denying yourself love and simple pleasures. For me, it has become a time to indulge in all the good things that I can. For me, I try and find the beauty in every day.
(Please note: I refuse to refer to it as "my disease" or "my illness." I have no ownership over it, and it is not a characteristic or trait.)