Juggling self-advocacy and self-care

A lengthy post about self-care and self-advocacy offered for discussion. The holidays will soon be upon us and the stress that they often bring heightens the need for a plan to take care of ourselves in the moment and to advocate for ourselves over time!

Being sick stinks. Having a chronic illness flat out blows. We have all had (and will probably continue to have) days where it seems nearly impossible to summon the strength to get out of bed, make ourselves something to eat, shower and so on. Getting dressed and going to work can seem like feats of strength—physical and mental. For most of us, I hope these days are few and far between—or at least getting more rare.

When these dark days do come, the need for self-care is job #1. We must look after ourselves. Showing some compassion for our situation is important. So too is a critical assessment of what we need (as opposed to what we want). What I mean here is that what I want when I am in pain, inflamed, fatigued, irritable and blue is to eat a cheeseburger, fries and a diet coke. In bed. With a Cadbury milk chocolate chaser. What I need though is to get up gently, dress warmly, take my medication, apply a heat pack to the parts that ache most, and try to get moving—whatever that might look like.

This is hard to do. Once you’re through the wants and needs there’s the long-term commitment to self-advocacy. When things are really bad, part of my self-advocacy routine is to reach out to my care network and tell them that things aren’t good. This way I’m not doing this alone. This network includes my significant other (I can’t expect her to simply guess what I’m going through), my friends, my supervisor (a quick email that lets her know that “today is a difficult day” is enough to inform her to lower her expectations while alleviating my feelings of guilt). I tell my team how I feel and I let them know what I need. Yes, this takes time and effort, but a few conversations when you’re setting up your self-care and self-advocacy plan will allow you to later rely on a quick email or a text to get the support you need.

Self-advocacy means pushing your medical professionals for help, using strategies to get them to hear you, and to request a different outcome than was agreed upon when you last spoke. For me this has meant keeping a brief log of how my symptoms have affected my daily functioning and presenting a list of the how the symptoms were preventing me from living my usual life not just describing my three worst symptoms (with accompanying photos). Self-advocacy means changing the way you talk to your doctor. I no longer go into an appointment expecting that he will “run” the session. Now I go in and before he examines me I tell him that x, y, and z have changed since we spoke last and that before I leave today’s appointment I want a plan of action and a back-up in case that one doesn’t work. Self-advocacy means being persistent and requesting answers. I am no longer willing to wait 12 weeks between appointments before I get help. I gladly use my rheumy’s email triage system, I call, and, on occasion, I have shown up unannounced at the office to talk to his staff face-to-face. I’ve even visited my GP and enlisted her help to raise an issue with my rheumy if I’ve not received a timely response. I am the patient. I need the help of my physician.

I say all of this with complete recognition that I have spent years (in therapy!) developing coping skills. I am also five years on the other side of having just been diagnosed and that full-on freaked-out-ness that goes with the news about having a chronic illness. I have a little more energy that I did early on but it is still not roses, lollipops and unicorns :unicorn: (unfortunately). But I trust myself. From experience, I know what’s serious, what’s a blip and what I can let go. And I know that I alone cannot fix this. I must rely on a team of paid professionals and caring loved ones to keep this show on the road. It can be exhausting work. It can be challenging to push for what you need without being aggressive. Some days I mess up. And other days I give up! But to achieve self-care I MUST be my own, fierce champion and tireless advocate.
:muscle: :trophy: :1st_place_medal:

What strategies have you (or friends) used to be your own advocate?


In case you want resources about self-advocacy, I recommend How To Be Sick by Toni Bernhard. It’s one in a collection of books by the author on coping with a chronic illness.

Hi there janeatiu… one of the most useful (and often most difficult) things I have been trying to do is think about the terminology I use when speaking to docs… one of the worst terms I use is “xxx feels better since being on med A”, it seems docs think I mean “it’s all better now”, when really what I mean is “xxx has improved maybe 20% since being on med A”… I really do need to concentrate on how I word things so that I’m not misleading docs with answers I give.

Also, I’m learning that questions usually get something of a response too… if a doc says something I don’t quite understand I’ll ask them to please explain that. If I have read something online I will ask the doc if what I have read is correct, this usually opens a discussion about it and helps me to clarify what I have taken from what I have read.

I think both of these are skills that need more practice on my part, but certainly seem to have helped get more out of my appointments… I guess in that sense you could say they are strategies for advocating for myself lol

On a personal level the biggest thing for me has been learning to say “I’m terribly sorry, I won’t be able to do that today” instead of just dropping everything to go help friends/family etc where I feel I’m needed… It still feels unnatural and selfish for me to do this, but I’m learning :wink:

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Practice makes perfect, right? Glad that you’re doing all the things you’ve mentioned here. This is what self-advocacy is all about!

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