There’s a lot of challenges that come with chronic illness. Managing pain, fatigue, frustrations in navigating our medical system and insurance are just tips of the iceberg. Most people dealing with chronic illness cope with much more than that, none of which is easy:

• We are told to pace, but life demands don’t always allow for pacing.
• We are told to be positive, when it’s hard to find much reason to be.
• People say, “If you need help, just ask!” when making decisions about what would be helpful is lost in brain fog.
• We can feel guilt for needing accommodation.
• We can fear appearing like a broken record if we talk about our ailments.
• We are gaslit by the medical system, misdiagnosed, or dealing with doctors who just aren’t informed about our conditions.
• We can be misunderstood, challenged, confronted, and judged because our issues aren’t visible to others.
• We often push past our limits, not wanting to disappoint people, or feeling pressured to use energy on the rare occasion we have it.
• We are already fatigued but constantly running mental calculations around our spoon budget.
• We are grieving loss of quality of life, sometimes sense of identity.
• Our close relationships may suffer connection, for a variety of reasons.

Chronic illness just plain sucks.

I was diagnosed with hypermobile Ehlers-Danlos Syndrome in summer of 2024. Even this specialist doctor, I felt, let me down. I got a label, a couple referrals, and…that was kind of it. I was under the impression it explained a few things in my past, but wasn’t really a big deal, was still wondering if the money for genetic testing was even worthwhile. It’s taken a lot of my own research, online, in support groups, and through very clinical books to start to understand all of what may be affecting my life, and learning that a lot of *typical* health advice such as exercise and even “drink more water” are not always right for our bodies.

If you or someone you love is struggling with chronic illness, I can be an understanding ear and provider of support in attempting to reclaim some quality of life and health. I have both lived experience and continue ongoing education around managing pain, fatigue, dysautonomia, and neurodivergence.