So you’re a Spoonie, now what? Here are my five top tips for your new life with a chronic illness.
1. Research your symptoms/ illness thoroughly
You might have your diagnosis or you might still be waiting. Make sure that you’re well read on your illness/ symptoms as your doctor might not be. Educate yourself on the various treatment options available to you and what type of specialist that you will need to see.
2. Do what feels right for you
One of my first doctors tried to start me on a graded exercise programme, even though they were not trained in that speciality. It was completely wrong for me and caused me to go into a flare that lasted for about six months. If something is making you worse, stop. You don’t have to do something just because a doctor told you to do it.
3. Take time to rest
When I first got sick, I was told that I would be better in three weeks and I tried to continue with my normal activities (Master’s degree + extracurriculars) and I couldn’t work out why I was struggling to keep up with everyone else. Eventually, I crashed and I had to drop out of University. I only started to see some improvements in my condition after I started to rest properly.
4. Change doctors if you are unhappy with the service that you’re getting
I wasted so much time at the start of my illness with a duff doctor who did not have the expertise to deal with my complex health needs. I wish that I’d taken the time to get a second opinion and a referral to the correct specialist.
5. Life isn’t a race, go at your own pace
It doesn’t matter if you don’t graduate with the rest of your class or if you don’t achieve everything that you wanted by a certain age. You’re taking time for yourself. You’re healing. In time, you’ll be able to pick up your life where you left off.
Having a chronic illness changes your life completely. Your priorities change and you may feel like a different person. Take some time to adjust to your new life with a chronic illness.