Hello and welcome to Believe in ME with Rhona Barton. In this week’s episode I’m going to be chatting to you a little about grief and ME.
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Let’s jump straight in.
When we think about grief or we hear people talking about grief, we tend to jump to the assumption that they are talking about the death of somebody they know. I would say that this is by far, the most accepted way of thinking about grief, based on my own experiences. In reality though, we can grieve a number of things, even those that are intangible. And this bereavement is a stress to our already delicate systems.
The top 5 most stressful life events haven’t changed that much in the past 10 years or so. Number 1 is the death of a spouse/child or loved one. 2 is divorce, 3 is moving house, 4 is major illness or injury and 5 is job loss.
Let’s take a look at number 4 there. Major illness or injury. Yup, that’s where we sit. People with ME can definitely say that they have a Major Illness. That’s a very stressful life event and, as I’m sure we all know, it has an impact on all areas of our lives. In my case, it knocked on to number 5, job loss and number 3, moving house. 3 of the big 5 stressful life events all conveniently rolled into 1 experience. That wasn’t the sort of multi-tasking I wanted to do with my life!
If we go on to expand this list to the top 10 most stressful life events, we go on to add in imprisonment, dismissal from work, retirement, marriage and marital reconciliation. I don’t know about you, but I certainly had times when I felt like I was a prisoner in my own bedroom so let’s go ahead and add a fourth to our list of the top 10 most stressful life events.
I’m not going to go on and look at the top 20 or even top 30 most stressful life events as there are others that people with ME would tick off like some really weird wish list including financial problems, not being able to get to sleep, worrying that you’ve upset a friend or even forgetting something important that you had to do! So, let’s call it quits with this particular list for now!
Long-term, or chronic, health conditions can cause stress for both those of us affected and our loved ones. In addition to life’s everyday stresses, you may have the added stress of managing chronic pain, increased financial burdens or dealing with limitations caused by ME. One of the ways I tried to take back some control of my sense of loss, was to find out as much as I could about my ME and what worked (or didn’t work) for me. This meant that I look at dietary requirements and found out reasonably early on that I was intolerant to dairy. I look at any supplements that could help to level out my energy blips and I was open to trying any and all therapy suggestions that came my way. This included hydrotherapy, massage therapies and even seeing a psychologist.
The one thing that I didn’t really spend much time on, was feeling my feelings. My emotions took quite a back seat through all of this and, even now, 24 years on from first getting ill, I still don’t think I’ve really delved that deeply into the emotional whirlpool that I lived with. So please, do not feel guilty if you are struggling to cope emotionally due to your ME. It can take time.
So, what was I grieving. One of the main things was the loss of my job. I was starting out in my career, so this felt that a massive hole appearing in my life. My job was gone. My work colleagues disappeared. My financial independence left me, and I was facing the prospect of having to give up my freedom in the form of my car and a house. All of these things are intangible. People didn’t seem to appreciate that it felt just as BIG as if a person I knew had died. It had rocked my world in a major way. I spent some time trying to make sense of my thoughts around it all. Again, the space I had in my brain to do this, was limited so that accounts, partly for the slow progress I made. Pretty sure burying my head in the same makes up the rest of it!
At the time, I had bought a copy of a booked call “Somebody Help ME” by Jill Moss. I had met Jill via the Association of Young People with ME (AYME) which she had founded, and I would later go on to be involved with as their Fundraising Officer. Jill’s book suggested diving my thoughts and feeling under 5 headings. Those being: Denial, Return, Anger, Guilt and Shock or DRAGS. The idea of this is to help you recognise exactly what emotions you are experiencing and to help enable you to deal with them in manageable chunks. You can find Jill’s book online by searching for Somebody Help Me Jill Moss.
So, let’s look at DRAGS in a little more detail.
Denial – I knew that I wasn’t in denial about my ME or how it was impacting me, but I was very aware that others in the family, those not directly involved with me, didn’t really believe I was ill. In any loss, denial is present and it’s one of the first feelings that we have to deal with. It’s far easier to believe that “it’ll all be better tomorrow, or next week or next month” but keeping up this illusion, can be exhausting. You are also denying yourself the chance to explore your ME and learn what works for you.
Return – You may find that your immediate family are desperate for you and the things you do together, to return to normal. They may even put pressure on you to do more as soon as you show some improvement in your health. Whilst it’s nice to encourage this, it can sometimes lead very easily to them jumping to the conclusion that you’re now fit and able to go back to school or back to work. That can be a hard pill to swallow as, if you return to your normal too soon, you can relapse. This can cause a lot of sadness, not just for you but also for your family. Going slowly, checking and resetting your baseline activities is going to help you build back your old lifestyle. Don’t be tempted to run before you can walk.
Anger – I think you’ll recognise this emotion in yourself and in those around you, quite quickly. It’s easy when people are shouting or yelling at each other but what’s more challenging to pin down, is displaced anger. This can show up as you believing that it’s all somebody else’s fault or that your friends have turned against you and that they are being horrible people. It’s not always easy to recognise this and for those with severe ME or for those who may not be able to verbalise their feelings, it may only become clear upon reflection. You may wish to do this by keeping a diary of your thoughts and feelings or by scoring your day out of 10 for example or even by finding somebody to share with.
Guilt – Oh guilt! Now this one I’m familiar with! It sneaks up on you and tends to present itself in the form of “if only”’s. Even when there is no reason to feel guilty, we, as grieving people, will manage to find one. As will our families. They will listen to every little bit of helpful information that comes their way and try to take action. This can lead to guild over the action taken so then there’s more action followed by more guilt over that action and so on and so forth! This cycle doesn’t actually help anybody, and it uses up energy. Try to see your guilt feelings for what they are and keep an eye out for them hiding behind Denial, Return and Anger as well! In this instance, I’m going to come back to the previous suggestion of keeping a diary of your thoughts and feelings to help you get to grips with things.
Shock – This may be the first emotion that you experience upon receipt of your ME diagnosis, but it may also be the last one that you come across. Quite often it’s the extent of having to come to terms with the unknown aspects of the condition that is the most shocking. The lack of definitive timescale for being ill and the fluctuating nature of the condition can all add to the struggle with the question of when will this end? When will my life be the way it was again?
Coming to terms with your ME and the limitations is can place on your life, can help us look forward and not back. If you spend time wishing for your old lifestyle, then you are still in “Return”.
It isn’t always easy to know whether or not you have accepted your ME as if you are in denial, you can fool yourself of anything! Sometimes spotting acceptance in other people, will help you to recognise it in yourself. Keep in mind that being able to recognise all of the DRAGS emotions, doesn’t necessarily stop them from happening.
That brings me to a few points from today that I’d like you to take away from this:
1. Try not to supress your emotions and find a way to express them. I’ve suggested keeping a diary, but you may want to try something like drawing, making collages, talking to a therapist or even voice or video recording your thoughts and feelings.
2. Don’t feel under pressure to seek “cures”
3. Don’t hold on to friendships that are causing you additional stress just because you are afraid of being alone. You can reach out to others or even support groups such as the 25% ME Group over at www.25megroup.org
So that’s it for today everybody. I’ve chatted a little about the grief I felt around my ME and some aspects that I found helpful. I do think this part of ME is worth exploring further and so I’ve reached out to a fellow coach – one who specialises in grief, and I hope to bring you an interview around this in the next couple of months.
Thank you for listening. Please review, share and follow Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk
My Facebook group, Believe in ME Community, can be found by searching for the Believe in ME Community (https://www.facebook.com/groups/716634186122640/about) via my Facebook page @rhonabartoncoaching.