On Living with Chronic Illness

Academia has swallowed me whole and blogging with my regular level of prolificness (words, never mind, i’ll create them) hasn’t been a thing. However, there have been a few things that have come up for me that have made me want to reach out to people I know and also have this in writing as a reminder to be gentle on myself and you can all hold me to it. I am having a particularly tough time with my health at present. I’ve just gotten through a few epic weeks and am having to restock the emotional pantry in order to move forward. I am also frustrated with the current level of ableism shown towards myself and my fellow chronic illness sufferers and people with invisible disabilities. So I thought i’d put together a few things i’ve been told, remembered, or understood. This is highly individual to me, it may seem 101 to some of you, and patronizing or cheesy, but it really helped me so i’m sharing.

1. Never comply with requests to justify or prove how ill you are. Not are they only incredibly rude, they often serve no purpose other than to demean you. You know the truth you live with and unless someone is playing a supportive role in your life, the level of your impairment is none of their damn business.

2. People will hurt, doubt, and accuse you. Chronic illness, particularly the kind of illnesses that aren’t seen or otherwise immediately identified, frightens people. It is hard for people with the priviledge of good health to understand how someone can be unwell constantly, or can have conditions that make participation in things impossible at times. Never take the accusing tones of others as proof of your own deficiency, it is not something that is within you, it is something that happens to you. Chronic illness is not a character flaw.

3. Persist. If you cannot get the right treatment, or are having trouble finding someone who will take you seriously, keep going. research your condition, find accessible doctors, therapies, modes of treatment that will benefit you, even if the decision you come to is not to treat your condition at all. The best resources are people themselves, talk, and make links. Medical professionals are often hostile to people who’ve researched and know their conditions, but ultimately you are the expert in your own life and health.

4. Boundaries are yours to assert, create, and maintain. One of the most challenging things in living with an illness is that people assume your body is property, and not yours. Intersected with gender and race, these can provide very many challenging problems. You have the absolutely unalienable right to bodily autonomy, and to accept or reject certain ways of thinking or treatments. For instance, I am constantly told by one friend that medications are harmful and I should embrace natural therapies. It took me a long time to realize that this would be an altogether bad idea for me, and telling this person that her advice is welcome but not neccesarily followed, was one of the best things I ever did. It cleared up where we both stood. This also goes for knowing your physical boundaries, knowing what you can and can’t do, and not being responsible for anyone else’s feelings if you simply aren’t up to doing whatever it is that needs to be done.

5. Never feel like you have to be an advocate for whatever condition you have simply because you have that condition. Advocacy is incredibly important, as is speaking back to people who have harmful views, and promoting awareness of the condition itself, are all vital parts of promoting greater health and wellbeing, however, it is incredibly important to know that it is not something that should be expected of someone. It should always be freely chosen. You are perfectly within your rights to live however you damn well choose, and not have anyone tell you you aren’t “doing enough”

6. You are enough. No matter who, what, how, why, where you are in your journey. You have infinite strengths and capabilities. I don’t want to say that your impairment is not your identity, because for some of us it is, but you are an infinitely capable, strong, powerful, effective person. On the days when you feel none of those things, it is perfectly ok to say… I am enough, in my state of brokenness, i am just fine.

also… i love you..