The Step-by-Step Guide to Getting Diagnosed with Chronic Illness
This article is written by Abi Stevens.
Living with chronic illness can be a lonely experience, especially for those who are less able to leave the house regularly. Thankfully, countless vibrant online communities are out there just waiting to be embraced. Here’s how finding a supportive online community can help people with chronic illness thrive.
First of all, online communities have helped me to discover new treatment options and trigger management for my chronic Migraine, as well as learn to adjust my expectations of what I can and can’t do. They’ve taught me to evaluate the energy various tasks and activities will require so that I can avoid over-stepping personal reserves.
But most importantly, they helped me to accept the ways my life has had to change and see a way forward in this new reality. Connecting to other spoonies online and talking to my chronically ill sister has been vital in helping me to adjust mentally to my change in circumstances and the uncertainty of my future.
We live in a society where illness is often only talked about in the context of the tragedy of loss or the triumph of ‘overcoming’. As a newly disabled person, it can be very difficult to reconcile your real life with how other people expect you to behave or look and the selective representation of disabled people in the media. Connecting with others who have similar experiences helps to recover your sense of self and realise that you are not a societal outcast set adrift alone, but one of many who support each other and fight to be heard.
A healthy person trusts and relies on their body. When you’re suddenly or gradually betrayed by your own body, it is devastating. Without the support, advice, and encouragement offered by others in similar situations, I believe it would have taken a lot longer for me to accept my new situation and adjust my expectations of myself and my body.
Most of my lasting connections in the spoonie community have been found through Instagram and Twitter. There are numerous groups and individuals whose accounts are dedicated to awareness and/or sharing stories about specific conditions or chronic illnesses as a whole. You can also use hashtags to connect with others with similar experiences. What starts as comments and follows can develop into DM’s and phone calls if you find the right people to reach out to.
Sometimes chronic health communities may be a bit overwhelming or become an unhealthy echo chamber for your negative emotions. When I was mostly bedridden by Migraine, I joined a Facebook group for Migraineurs. A Facebook group is one long stream of posts and, as it was a very large group, the feed tended to fill up with people introducing themselves and talking about how much pain they were in and how hopeless they felt after treatments were not effective.
I read some of the stories, identified with them and felt a little less alone. But after a week or two, I realised that this constant stream of distress was amplifying my own feelings. I had to leave because I wasn’t in the right place emotionally to be able to be present in that group without getting stuck in that negative feedback loop.
In contrast, I also spent some time in the chat groups on the Migraine tracking app I use – Migraine Buddy. The app features chat groups broken down by topic, so you can choose a chat group to discuss a specific symptom or medication with others. There tend to be only a few people active in each chat room, which makes the conversation more manageable, focused, and less likely to doom-spiral. It’s a less conversational format with less room to connect to individuals, but for a spoonie in crisis, it was a much healthier space to be in, with more direct access to advice.
To keep from being sucked into a negative headspace, it’s important to know what you want from a community before you dive in. When you first join a new group, page, or forum I recommend giving it a test period. A couple of days to a week after joining, take a few minutes to think about how you feel after reading posts and joining discussions there. Did they help you feel more positive and supported, or reinforce negative feelings? If it’s the latter, reconsider if that group is a healthy place for you personally at this time.
Taking a moment for reflection before diving into discussions or groups online is a helpful rule. Regardless of original intentions, conversations in chronic health groups can devolve into trauma-dumping. Everyone needs to vent sometimes, but it’s important to think about whether the space you’re in is the right place to do it, and whether you may be off-loading trauma onto someone who is not in a good headspace to deal with it.
Before responding, re-read the original post to determine if people have been invited to share their personal stories in-depth, or if a brief comment of solidarity would be more appropriate. Learning to respect other people’s boundaries will help maintain your own.
You are not obligated to share personal experiences to be a legitimate member of a spoonie community. However, if you share in the right place, it can be a cathartic release. It’s the greatest feeling to make a genuine connection with others who understand what you’re going through and support each other through it.
Enter an online community with respect and caution and you will find groups of people who are wonderfully accepting, kind, and with much will to help. Treat them with respect and care in return and you can create rewarding and lasting friendships.
Author bio: Abi Stevens is an illustrator and product designer who is both neurodivergent and chronically ill. Her colourful work often advocates for and empowers others in the disabled community. You can find her colourful portfolio at www.abistevens.com, follow her on Instagram and Twitter as @AbiStevens_Art, and shop her motivational products at www.abistevens.etsy.com.
If you enjoyed reading this article, you might also like 10 Spoonies You Should Know and Follow or Art Therapy: 44 Creative Ideas to Support Your Health and Happiness.
