ME/CFS, Long COVID and Firbromyalgia and
​any other Medically Unexplained Conditions 

This picture reminded me of how I felt when I was diagnosed with ME/CFS and then Long COVID.  I was desperate to find someone or something to help me and I searched and searched, the internet mainly.  I tried many things and eventually I started to recover.

What does recovery mean to me?
My recovery is defined by the fact that I can now function in the world. I can do one thing after another without feeling like I have the worst hangover ever. It was my son who summed it up for me one day, when I had explained to him how I felt after the day before I had visited a friend for a couple of hours, and done hardly anything else.  "It sounds like you have the worst hangover in the world mum, and all you have done is something you enjoyed, not even had a drink." ​
Yes, recovery was defined by not feeling dreadful after any activity.  I am not back to how I was before, and it was a gradual process, no miracle cures, but it went from something like, being able to see a friend and talk and sit up for two hours every other day, to being able to see a friend like that every day, to being able to do that and change the sheets on the bed, on the same day, and so it continued; I'm sure you get my drift if you've been used to pacing. 
Then over a period of time I would realise that I was doing things one after another without thinking. Or I would suddenly see that I was walking up the stairs alternating steps and not holding onto the hand rail or I could carry a bag without ill effect.  At my worst I could not even carry my handbag and was in a wheelchair to go any distance. 

One Step Forward, Two Steps Back or Sometimes Five!
Whilst I was ill, over a period of five years, I felt like I was on a snakes and ladders board. I would go up a few spaces then be sent down the snake.  When I recovered I felt I had mastered a complicated Rubik cube puzzle, suddenly all the pieces fitted together.  I can not give you a formula for recovery. I believe it is different for every person, annoying though it is to be heard.  I can tell you that Internal Family Systems (IFS) therapy was part of my recovery programme as well as daily mediation and Qi Gong.

Why IFS Therapy helped my recovery.
My hypothesis for why IFS therapy helps people with medically unexplained conditions is absolutely NOT because I think these conditions are anyway in the person's mind. I know that what I had was physical and I know that mind over matter did not work, in fact mind over matter made it worse.  I was the bounce back Queen. I had bounced back from one stressful event to another, with my mind.  I do believe that my body took over and said enough is enough, the only way to stop this woman is to send her horrid physical symptoms and cut off her energy supply.  I believe if anything my body took over from my mind.  I strongly felt that my body was just saying NO, that might not be the same for everyone, it was just what I felt was my experience.

IFS and the Stress of a Medically Unexplained Condition
I believe that having a medically unexplained condition that debilitates you so your life is beyond your recognition is one of the most stressful things that can happen to a human being in our modern society.  Medicine is geared to us going to the doctor to find out what is wrong and then we are given the treatment. When this happens and there is no treatment and no explanation given as to a cause, then this is a stress in itself.  I believe therefore that IFS therapy can support you even if it is just to work on the parts that are reacting to having the condition. 

IFS and Pacing
Pacing is one of the few things we can do when we have this type of fatigue illness, (by the way I have a part that hates the term fatigue, it makes me think of a woman lying back with some smelling salts, but I am using the term because it is what is commonly used to call the awful feeling you get when you know you can not even sit up a moment longer.  Oh and sorry yes, I have another part that hates pacing.  This part says, sarcastically, oh yes if only I could not do the things, that not only I need to do to live, but I WANT to do: life would be fine!  Yes, fine, as in not feeling dreadful, but with no quality or enjoyment to it! ) Anyway sorry for those parts butting in; they are parts I have worked with and am still working with to keep me on track, but I felt I had to be genuine and share their thoughts.

Back to pacing and IFS. I see the support from IFS therapy as being part of pacing.  If there are parts of you that are using a lot of your energy, then IFS might help them to reduce the amount of energy they are using, thus helping the whole system, and making room for you to use energy doing something more useful or enjoyable.  And as explained in previous sections in IFS therapy we welcome all your parts and do not tell any of them to stop what they are doing. We just try to get to know them, to see if we can understand them better and help them to understand how life is now and see if they would like to try another way of being or dial down what they are doing. 

IFS and Your Coping Mechanisms
It is likely that, because you are in a stressful situation, having a medically unexplained illness, that your coping mechanisms will kick in, and some of these might have behaviours that are not helpful to your system and some of these, like exercise and socialising for me, you may no longer be able to use.  It may also be that some new  coping mechanisms have been made or parts developed in order to help you cope with the condition.  These parts, in some instances, may have taken over running the ship or there may be parts of your system in opposition to each other.  I had that sarcastic part from earlier that hated pacing and another part that tried to stop me doing things; they were in tough opposition with each other.  When I got to know them better and understood their motivations, day to day decisions, about what I could and could not do, became easier.  

All the parts I have mentioned are all trying to help you keep going and manage a horrible situation, they are working hard to protect you and your system.  IFS therapy will aim to support these parts, who are often exhausted themselves, and through compassion and understanding see if they can bring some calmness to a system that is under such strain. 

IFS and Meditation/Mindfulness
The other good thing about IFS therapy for people with fatigue conditions is around meditation/mindfulness.  Meditation/mindfulness is another thing that has been proven to help fatigue conditions.  Again I was very resistant to this at first. I had to force myself to lie down and I think it took me years to actually really relax whilst meditating. I still meditate twice a day, as again, although I say I am recovered, I continue to do things to support my body and mind to prevent a relapse.  IFS therapy can feel like a kind of meditation, it is described as a mindful therapy. For this reason it can be less taxing on the system, when energy is at a low ebb, than more traditional therapies.  You can even lie down for the session, if preferred, and keep your eyes closed.

Please do get in touch if you have anymore questions about how IFS therapy might help you and your condition.