I don’t know why this is an unpopular opinion, but it is:
I feel blessed to live in a country where I can obtain so many accomodations to offset the effects of my disease.
If I were in many other places, or a third world country, I would have died within a few months of getting sick; there would have been no chance for me. Obviously that wasn’t the journey I was meant to take, would not have given me the lessons I was meant to learn, so here I am.
Things are not perfect, but it is a wonderful thing that we do have support systems in place for people in my situation, regardless of how many politicians call us malingerers or how many bitter people try to loop everyone on social security/welfare into one big “something for nothing” group.
All these things–social security, medications, things like laptops that help us connect to others in a housebound state, and things like wheelchairs and adjustable beds and home IV therapy–give us a chance at life that many before us never had.
This thinking I’m doing comes from a frame of mind that doesn’t expect other people to owe us anything. It comes from pondering Buddhist philosophies which simply seek to be realistic, accept What Is, and not live life in a constant state of wanting. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but that suffering also exists– as a fact and not a punishment.
Yes I am upset at the discrimination of the now-infamous “47%”; yes I think it’s our responsibility as human beings to try and care for one another and get help to those who need it; yes I think it’s our responsibility to speak out against injustice, when we have so many means to help people, and those in places of power are not cooperating.
I’m not suggesting we simply turn up our noses, say “it is what it is” and not try to change it. But while you’re waiting for things to change, you have to accept the way things currently are; you have to realize what you have, and realize how blessed/fortunate you are to even have that. If you have something that the majority of the world does not, you are blessed.
You have to realize how amazing it is that you have methods to help manage your illness; medicine to help ease your pain; things like soft beds to lie in; the right food to eat when so many of us have allergies and intolerances, a place to live that has temperature control when most of us have dysautonomia. Many in developed countries, I think, forget that the majority of the world does not have these things to the exceeding surplus that we do.
I can’t forget that if I were somewhere else without these accomodations, I would perish.
Of course it is disappointing when there exists external items to help you even further, that are created for the purpose of helping–like money, certain foods, certain medical treatments–and for whatever reason, you don’t have access to them.
All the time, I see people with myalgic encephalomyelitis with no hope of getting better because research for our disease is not being funded (though the FDA did recently vow to find medications to treat both CFS and M.E.–not “ME/CFS,” but both seperate, distinct conditions). I see people with Lyme disease and its related infections trying to raise funds for their own treatment and cure which DOES exist, but because our government does not currently believe in our illness, getting access to it is sometimes impossible. I see people who are disabled and, due to the system we’ve created, should be able to receive benefits to live on, but are not getting them. Things are not perfect.
But what about what you do have? What about the things that help you face the day, without which you’d have been gone long ago?
Sometimes when I am in those situations–lacking things that I “should” have, but do not–I try to find gratitude for those that do have them. I try to be happy for those whose test results and various means of funding enabled them to get PICC lines and ports and hyperbaric oxygen therapy; somewhere there is a person who cannot get any antibiotics, who wishes they had the medication I do. Somewhere out there is a person who wishes they had a doctor who believed them; adequate pain management; funding to get accomodations for daily living; friends who were there for them; family who supported them.
I’m still going to be extremely disgruntled when my head feels like it’d be better off removed.
I’m still going to feel like crying when I hear another child with M.E. has been forced into asylym because their doctors do not understand what they’re doing.
I’m still going to be bothered by the fact that I will never be able to get IV antibiotics with my test results, just because my immune system is too poor to make the tests show my positive antibiodies.
Again, I am not saying we are to be emotionless zombies without a reaction to anything. I don’t want to type this and make it seem like I live in another world where nothing bothers me. I am trying my best to improve my state of being through whatever means available, just like the next person, even if often my body cannot cooperate yet.
I just find it better to guide our thoughts into being thankful, instead of dedicating so much of our time and energy to things we do not possess; self-compassion is better than self-pity. I find it better to realize that having anything to help us through disease is a miracle, because we are not, in fact, entitled, but blessed that we got sick in a place where anything at all could be done for us.
I just find it better to live in gratitude.
♥ a rainbow at night
(Postscript: I was honestly scared to post this. I feel like, if absorbed in the wrong way, it will seem like I’m saying, “You’re lucky to get what you get, so shut up,” and that is not my intention. I know I’m not entirely responsible for how people perceive my writing, but I do hope I’ve framed it enough in the way of, “You are lucky to get what you get, and I think it’s best to focus on that while you try to get whatever else you need.”)