I have been living with severe asthma for as long as I can remember. It has been very lonely and isolating at times. Imagine being tied down to medication regimes, always being uncertain of how you may feel from day-to-day… or even from hour-to-hour. This was particularly apparent when I was a young adult with friends who had no clue what it was like to be unwell.
This is why it was important for me to make connections with others who understood my experience. To that end, I reached out to the severe asthma community for support and advice, knowing that they experience the same struggles as I do. We would share tips to overcome obstacles, manage work-life balance and relationships and anything else that might crop up in our day-to-day lives with severe asthma.
These types of communities are easy to find online. In fact, you’ll see there are a huge number of forums on all sorts of chronic conditions. However, they tend to be quite condition-specific and don’t include people across different conditions.
I’d never really thought much about this until I recently met two other people who also live with chronic, but different conditions.
Finding common ground across conditions
I met Daisy and Barbara at an industry event where we were all speaking on a panel about our experience of living with chronic illness. What became apparent very early on, is that despite us having three very different health conditions (severe asthma, chronic migraine and multiple sclerosis), we had a lot in common.
All of us had to prepare carefully for the impact the trip would have on our bodies – both before and during. We also had to schedule in time to give our bodies the rest and recuperation it needed afterwards. Our lives were impacted in many similar ways and we found ourselves nodding along to each other’s stories.
It made me realise how much we could all benefit and learn from speaking to others with chronic health conditions outside of our own.
For instance, recently my mobility has been negatively impacted because of my condition, but not many who live with severe asthma experience mobility issues. Being able to glean valuable information about managing mobility issues from a person living with MS was really helpful. This helped me to embrace walking with a stick, rather than be ashamed of it because I looked ‘too young’.
Another positive in meeting others outside of your own condition area is that you would probably be less likely to compare yourself to them. When you start looking for support and advice from others inside of your condition, it’s very tempting to compare yourself to them. Intrusive thoughts would often run through my head like: “They look as if they’re coping well, so why aren’t I?” or on the flipside: “I’m not as bad as they are, I can’t ask that question!”
Even when I’m at my most positive, I find myself comparing myself to others with asthma – I can’t help it. It’s natural to want to do this, but it’s not helpful. Everyone deals with their condition in their own way. Some people have good spells and others don’t.
When I met two new people who lived with MS and chronic migraine, I felt like I could communicate openly without any barriers. I couldn’t directly compare my experience of asthma to theirs and their condition, because we were all so different. And yet, we could share the experience of mitigating our symptoms, and managing life with the unpredictability of chronic illness.
UK/MED/19/0288 November 2019