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, it 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. (Hell, when I was growing up we had to endure illness without the invention of the internet! Can you imagine? Haha.)
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 seek to be realistic, accept What Is, and not live life in a constant state of wanting. Because that’s certainly not the mindframe of most here in the West. It comes from thinking that we are worthy of love and joy and peace simply because we exist, but hey, suffering also exists: as a fact of life, 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 become aware of what you already have, and realize how fortunate you are to even have that.
It is amazing that you have methods to help manage your illness: Medicine to help ease your pain; soft beds to lie in; the right food to eat; indoor temperature control, which is an often overlooked accomodation. 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. If you have something that the majority of the world does not, you are blessed.
I cannot forget that if I were somewhere else without these accommodations, I would perish. My daily life makes that uncomfortably apparent.
Of course it is disappointing when there exists external items to help you even further, that were created for the purpose of helping–like money, certain foods, 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 separate, distinct conditions). All the time I see people with chronic Lyme disease and its related co-infections trying to raise their own funds for their treatment and cure, because our government does not currently believe we even exist and getting the proper medications can be impossible. And I see people who are disabled and who should be able to receive benefits to live on so that they won’t become homeless, but who are not getting them due to flaws in the system. 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? Does it truly not matter that those things have helped you stay alive up until this point?
Sometimes when I am grieving the things I’m “lacking” but “should” have, at some point I try to practice gratitude for those that do have them. I.e. I try to be happy for those whose test results and various means of funding enabled them to get the PICC lines and ports and hyperbaric oxygen therapy and infusions. And somewhere out there is a person who cannot get any antibiotics, who wishes they had the medication I do; a person who wishes they had a doctor who believed them, like I have; who wishes they had adequate pain management; had funding to get daily living accommodations; 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 than attached to me.
I’m still going to feel like crying when I hear another child with M.E. has been forced into a mental asylum because their doctors do not understand the harm they’re inflicting.
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 functions too poorly to make those tests show enough positive antibodies.
Again, I am not saying we are to be emotionless zombies without a reaction to anything. 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 also don’t want to type this and make it seem like I live in a fantasy world where nothing bothers me. I’m 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 gratitude instead of dedicating our limited, precious time and precious energy to all the things we don’t have; 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 to it, 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