When I was first diagnosed I read a lot of books about PHN, pain management and CBT. Almost all were frustratingly useless and only succeeded in making me feel terribly alone. Then I discovered How to be Sick by Toni Bernhard and it was a revelation. What stood out was the compassion; not only for the sick person you are now, but for the transition from being healthy to the sick person that you are now. A regular contributor to Psychology Today, Toni did a ‘12 tips from 12 years of illness’, so I thought that I’d do my own version to mark my 12 year anniversary back in January.
- You gradually accept your metamorphosis Letting go of your ‘old’ life and accepting changes to your identity is a monumental step and one that is a continual work in progress. You aren’t any less of a person just because you are wonky; you are just a different version, and one that can be just as much, if not more ‘you’ than you were before.
- Sorting out your screws This is my Dad’s term for losing yourself doing a repetitive task that requires concentration. I’ve since discovered that this is also a mindfulness exercise. By completely focusing your mind on the task at hand, you are preventing your brain from wading into a quagmire of what ifs and worries. When things get really bad I organise beads and threads or more often than no sew. It doesn’t matter what it is, just that it is distracting and interesting.
- Achieve something every day that makes you happy At the start of my illness I thought that I had to achieve something every day, fearful that I would lose myself. Now I think that it’s more important to do something that brings you joy – however small or silly. You might not be happy all day, every day but achieving something that makes you happy is a far simpler and a more enjoyable task.
- You realise everyone is a medical expert. You are often told about an article where someone was cured with Manuka honey or breathing in a certain way, positive thinking or geranium oil*. Often this is comes from a place of kindness, but always comes across as ‘this person is better, why aren’t you?’ If all it took was to douse myself in honey, chant or go gluten free I would have done it 11 years and 11 months ago. My advice is to just say “Thanks, I’ll look into it” and leave it there.
* All of these have been suggested to me
- Therapy I was adamant that I could cope on my own by reading self-help books, and it took reaching rock bottom before I realised I needed to talk to someone. Not only has it helped me work through the issues that caused my body to have a melt down, it’s also helped me understand about being an introvert and managing my pain. Most of all I discovered I was an HSP which answered so many other questions. It’s not an easy option and it takes a lot of work, but it’s worth it when you realise how much energy you are freeing up.
- Take charge of your own healthcare Doctors are only human and as someone who is probably becoming an expert in your illness, you need to make sure that you are able to fill in the gaps in their knowledge. I also keep a diary of symptoms, changes in medication, and triggers
- Grieving There will always be a part of me that is ever so slightly shell-shocked wondering what the hell happened to me. This in itself shows how deep the grief is and it is common whatever your illness. It’s also totally natural to grieve for your old life, for your old body and who you were when you were healthy. This grief is cyclical, every so often it hits you, you deal with it – and rinse and repeat. By accepting that it will revisit you is half the battle and takes the sting out of any surprise, even though the sadness is still there.
- Time changes What takes a healthy person 30 minutes, usually takes me at least three times as long, thanks to pain and ‘pacing’. On top of that is payback in the form of increased pain and a collection of other symptoms. If you are lucky it’s just for a couple of hours, but more often than not it takes days to recover.
So not only is the frustration that things take longer, but it also means that if you do something that will leave you with payback, you want to make the most of it. Just as if you are going to treat yourself while on a diet, you want to make sure that the extra calories are worth it. If I am going to have days of payback, I want to have optimum bang for my pain ‘buck’.
- The importance of having the right people around you Having a chronically ill friend is hard, some people step up, learn and your friendship becomes stronger for it. Others will bemoan that you aren’t the ‘old you’ making you feel ever so slightly substandard. If someone can’t accept who I am now, illness and all, then all the history between us won’t make up for the emotional pain that causes. It’s brutal, but taking into consideration the previous point, these interactions need to count. Being made to feel awful and physically pay for the privilege is not worth it.
- It’s OK to be angry/sad/furious You are human and you are going through a lot. It’s not just that you are suffering from an illness, but your whole identity is evolving too. It’s also frightening as you deal with career change/unemployment, friends not being able to handle your illness, and all the while trying to find a way to exist within your body; and it’s not fair. Be angry, be sad; just try to find a way of balancing this out with more positive things even if it’s losing yourself in cat videos online.
- Learn there are times to stop and there are times to push yourself
Knowing the difference can be tricky, in fact I wonder if I’ll ever truly know, which is why it’s often so frustrating. However knowing it’s OK to stop and that it isn’t a defeat is just as important to learn as it is to learn when to push yourself.
- Reach out. The internet is a keystroke away I have found allies and friends online. On Twitter, I’ve made friends with fellow HSPs, chronically ill, INTJs, as well as authors, activists and musicians. While on Facebook I’ve found support groups. They have expanded my horizons, allayed my fears, challenged my preconceptions and even made my life easier. It’s the perfect way to connect with people; if you get overwhelmed you can turn it off and do something else. You can also do it in your pyjamas with the cat and tea – which is damn near perfect for an introvert.
My final thoughts on this, is that you find a way to keep on going. Some days are (much) harder than others, but you get through them. Sure, you may have to let go of plans and people, but they get replaced with others – and maybe those are what you were meant to be doing all along.
If you haven’t read it already, please read How to be Sick. It’s a life changer.