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6 Ways I'm Taking Ownership of My Lupus

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What helps me to approach my disease more positively is accepting it as just another part of me – as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that.

1. Learning about lupus.

While lupus still remains a “mystery,” there are a bunch of online resources which document what is known so far. (It is one of the things which makes me incredibly grateful to have easy and regular access to the internet.) I try to stay updated about several aspects of the disease, including how it affects different body parts, side effects of medications and what researchers are currently focusing on. Not only does it help me to develop ways to better manage my disease, but – I’m not even sure why – it is also weirdly empowering to know what’s going on and to be able to explain it to yourself and to others.

2. Reading other patients’ stories.

For a start, going through social media posts from other patients helped me confirm patterns which I noticed about my lupus but have not yet been medically proven. One such example is how I had the impressions that my periods could cause lupus flares, but I couldn’t find a single medical article which proves this to be true. Yet, by going through forums, I read messages from a lot of other patients who also experienced flares during their periods, indicating that perhaps this is fairly common. Another perk of going through articles written by fellow patients is that they tend to cover more practical and emotional aspects of daily life with lupus or another chronic illness.

3. Asking questions.

Closely related to my first point about educating myself is getting actively involved in the process of learning by asking questions. I usually write down questions/issues as they pop up and arrive to my appointments with a list. I’m lucky enough to have healthcare providers who take the time to address my concerns and who admit their own limitations when my questions get into an area of lupus which cannot be explained yet.

4. Proper organization.

Having my own system of medical records allows me to track my health and to be equipped with accurate information whenever I need to see a new healthcare provider. Some of the tools I use include: a diary with daily entries about my meals, medicines, weight, hours of sleep and symptoms; a file containing prescriptions, blood test results and receipts arranged chronologically; and my phone, daily diary and desk planner on which I note appointment dates (and questions to be asked during those!).

5. Communicating my needs.

Managing my diet, activities, sleep and other parts of my lifestyle is as important as adhering to a treatment to control lupus. It tends to be embarrassing to be the family member/friend who constantly requests “Can we do this instead of that? Because of lupus, I…” but I’m slowly trying to get past the discomfort and the impression that this makes me a picky/annoying person. It doesn’t make sense to keep quiet about my illness and then be annoyed at people who “don’t get it” (as I initially did) or to simply opt out of certain activities rather than coming up with alternate ways in which I can participate (which I also did). Speaking out is therefore a must. Over time, my loved ones have learned to anticipate and accommodate my particularities – another one of those little things that makes my life easier and for which I’m utterly thankful.

6. Raising awareness.

A few weeks after my diagnosis, as I was browsing through ways to cope with chronic illness according to the Acceptance and Commitment Therapy, I came across this sentence: “Create meaning out of your pain.” Sharing information about lupus through a blog spoke to me: it gives me another reason to learn about that topic, it can be helpful for both lupus patients and those who know nothing about the disease and – as someone who studied and works in Communications – blogging, social media management and content creation allow me to exercise my skills and do something I enjoy. It turned out to be a great choice and, to me, few things are as rewarding as noticing that others show interest and want to know even more about lupus. Being told, “I went through your post, do you mind if I ask you some questions about lupus?” is always a win!

Thinkstock photo via julief514.

Originally published: May 15, 2017
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