Invisible me
The reality of invisible illness and how I'm making myself seen.
I shared on my stories a while back about how when my dad died, I was recovering from a severe migraine attack and couldn’t cry for 2 weeks after due to the head pain this triggered all the way around my head - to such intensity that I had to hold it all in.
In the days and weeks leading up to his death, I was by his side 24/7. I simply couldn’t leave his bedside in hospital. I was given a room with a bed, a tv and a shower room and instructed by the nurses to make sure I at least had some sleep on a night-time.
In the last 3 days, on the day before he took his last breath, I was laid up in bed enduring a severe pain attack. I couldn’t move, eat, drink or speak during those 72 hours.
I nearly shared a few more stories about the irony of being in a bed in hospital, enduring such severe pain and no one noticing. But I realised I was triggered and decided against it until I worked through what was triggering me.
What triggered me was the fact that no one noticed! I was completely invisible.
I was in a hospital caring for the very sick and those in pain and suffering. I was a person in there who was very sick and in pain and suffering, yet no one could see it.
Sick patients being given pain relief, drugs and medication to help relieve their pain and suffering - no one had any idea that I was one of them.
Instead of sharing further stories about the irony I chose to sit with what was coming up for me and recognise what was happening.
I was triggered by my insight. This whole time I’ve been living with indescribable and unimaginable levels of pain, and no one had a clue.
At the time my dad died, I’d only just been diagnosed with migraine disease some months earlier.
Within 3 months of my him dying, I was chronically ill and completely disabled by illness – unable to get out of bed, never mind work.
Yet, still, what I was going through was completely invisible to everyone around me – work colleagues, friends, family, boyfriend, doctor, neurologist.
Not one person has been able to see, feel, measure or comprehend the levels of pain I’m talking about.
No one can understand the physical, mental and emotional assault this has had on my body.
It took me a long time and a lot of work (in respect of research, understanding, making changes and healing) to really get to grips with and have some insight on this myself.
Perhaps one way to relay what this is like – not just for me, but for millions of other people living this way too – is to let you know that this is so barbaric, so horrific that we would not wish this on our worst enemy. We only wish even that person well rather than have to have them step into our shoes for even just one day.
Here’s how I have learnt to deal with the invisibility of disabling and debilitating illness:
1. I started to connect with, tune in to and trust my own inner knowing, intuition and inner wisdom.
For a long time, I knew that too much stress and persistent pressure was a big factor to the deterioration of my health. At one point I was told it was my age, but deep down I knew this was not true. It was only when I started listening to what I knew to be true that I was able to really do something about it.
I drowned out the noise all around me, stopped listening to others who couldn’t see or didn’t have any understanding of what was going on for me or what it was like to be living this way.
I journalled what was coming up for me and what I needed to do.
2. I rescued myself
What was also true for a long time, was that I was sat around waiting for someone to rescue me. A doctor, a specialist, a boyfriend. Someone, anyone who could validate my experience. I was looking for THEM to change. I believed that if they did, my health and sanity would benefit. That I would be rescued. Saved.
It was a big wake-up call to finally realise that NO ONE was coming to my rescue. When it was officially confirmed that there was no support available to me at all whatsoever and that no one believed in my capabilities of turning my health condition around independently, it was I who realised that no one else was going to take responsibility for the disabled life I was now living, tied in mortgage payments to make and no income.
In many respects, the day I woke up was the first day of the rest of my life. It was far from easy to have to be the one to deal with this and learn to make the change from wanting and waiting to be rescued to being the one to rescue myself. This was a very tough and difficult time in my life indeed. It did not bring about immediate ease and any reduction in attacks/pain/suffering but this was very much a turnaround point and that did start to happen later.
3. I did what I could when I could
As a person completely disabled by two 72-hour pain attacks a week, with no time for recovery between, it could be argued that there wasn’t space in my day/week to look into making changes, read up on my health condition and ultimately use this as a fully justified excuse and reason to follow my neurologist’s advice which was not to bother.
However, for me in the very first instance, the approach I took was to look at what I couldn’t do (because I was bedbound a lot of the time) and make these the changes that I would imbed into my life.
The first two being that I made the decision to stop binge drinking alcohol and caffeine. I physically couldn’t drink either because of the endless debilitating symptoms I was experiencing at this point. So, this really helped me to make changes even though it would be perfectly acceptable to assume that I couldn’t at this point.
Beyond that, I kept an open mind.
It wasn’t the case that I could give my diet the big overhaul there and then, make drastic changes to my life. I had no basis or ideas on which changes to make or how to make them at this stage. It was enough for me to know at this time that changes were what it was going to take and that this was something I could look into – when I was able to.
I made changes that felt supportive to my health. This meant doing what I could when I could and not putting myself under pressure to make changes all at once.
4. I identified what my needs were. And put in place measures to meet them.
I quickly identified that under the care of the NHS from diagnosis only months earlier (after 20 years of medical gaslighting) to the point of being completely disabled by illness, that my health was deteriorating further.
My need was to get better. To work out a way to generate enough income to pay my mortgage and outgoings.
My need was much needed and essential support to make this happen.
My need was to understand more about the disease I was living with so that I could make changes that felt supportive to my health.
I’d had it confirmed by my neurologist that they didn’t believe I could get better. When I asked for it, I was told that there was no support at all available for me.
Identifying my core needs helped me make decisions on where to focus my already very limited time and energy resources.
To me, there was no point pursuing this avenue to meet any needs I might have if my needs were not going to be met.
Once I’d broken the chronic pain cycle and started a weekly yoga class to heal myself through the only movement I found myself capable of doing, I came across a therapy called bodywork massage therapy. I knew upon experiencing it that this was just the kind of support my body needed. When combined with the healing coaching/support guidance that I receive as part of the yoga and bodywork, it became critical to my health, healing, wellbeing and forward movement. I still have this much needed support mechanism in place now.
At the time, all my decisions and choices were questioned but nobody asked why I made the choices I was making or took time to understand how I was feeling about what I was facing and living with.
Emotionally supportive relationships also became a need I identified.
Before I reached this aspect of my health journey, I had no idea what my needs were, never mind how to express or communicate them.
5. I journalled the crap out of all my problems
All the problems, misunderstandings, issues, challenges, anything that stressed me out or was bothering me, I journalled about it. Wrote it all down and got the never-ending thoughts in my head down on to paper.
Journalling was one of the very first things my counsellor (who I saw for 3.5 years) encouraged me to do. I’ve since seen it as a tool that saved my life.
Fair enough, I only started out at it once or twice a week. But for the last 2/3 years I’ve journalled every single day.
Over these years I’ve not only seen it as a tool that saved my life, but one that’s helped me work through all the major challenges and issues I was experiencing. Also, as a business tool and one that now really helps me level up in all areas of life.
6. I became my own advocate, best friend and cheerleader
Ideally you will be in the fortunate position where you have someone to advocate for you, a best friend who is emotionally support and a row of cheerleaders to cheer you on.
This wasn’t the case for me, as I understand it isn’t for many of us. Please know that you can learn to do this for yourself, just as I have.
I’ve experienced plenty of people sharing with me their thoughts, opinions and judgments. Tell me what they would do if they were me. But I’ve only had one person in my life step forward and suggest that they would like to research and understand more about what I’ve been living with and going through all this time.
In the absence of anyone coming to rescue me and do the work for me, I made a commitment to research, learning and understand all I could about this disability and illness myself.
I saw videos on migraine, read books, joined the Migraine World Summit, watched webinars and over the years I’ve learnt just how utterly complex this disease is and how it came to be so misunderstood.
I befriended my pain and began to see it for the messenger that pain is. It’s our body’s way of communicating to us. In doing this, I found out how I was feeling and what my (limited) self-beliefs and the core messages I received in childhood. All of which helped me heal the relationship with myself, as well as massively reduce the levels of pain intensity, severity, frequency and duration.
I felt it. Acknowledged it. Stayed present with it. Established a relationship with it. Loved it. Witnessed it. Asked the pain how it thought I was feeling. Got to know that part of myself.
Though a painstaking journey in and of itself, I learnt to cheerlead myself on.
I’ve been standing on high alert waiting for the reward, recognition and validation that I’ve been primed to believe I will receive through my mainstream education and upbringing all this time. My badge of honour and good girl rewards, where are they?
Only to find myself hurt, devastated, triggered and resentful when it’s not been received.
Much like the realisation that no one was coming to my rescue, I have, so too, realised, that not many are around to cheerlead me on. I’d been too busy concentrating on the naysayers wondering why they weren’t handing out gold stars to take notice of anyone who was.
Through my own reckoning, for someone to really cheerlead you on, they need to have a glimpse (even if only a little) of who you are, your vision, values, goals, beliefs, dreams, desires as well as an idea of how you’re feeling, how far you’ve come and what your needs, strengths and priorities are.
What I’ve found usually to be the case, is that I’ve being judged on someone else’s.
Whether that’s by me (judging myself on someone else’s expectations) or has been reflected back to me by those around me.
I’ve had to sit with the question, how can I expect someone else to know, see, hear and understand me if I don’t know, see, hear and understand these things myself?
I’ve really taken the time – more so as my health has continued to improve on this one – to connect with each one of these areas. In doing so, I more deeply understand what matters to me and what is most important.
The difference? I have more cheerleaders on the side lines than I noticed before! And I take it less personally when someone can’t be happy for me or see me for the true me.
7. I pledge to share what I’ve learnt with others
So that they too can learn to witness themselves and validate their own pain, suffering, limitations and challenges.
We desperately long and want and wish and wait for others to do this for us, but the truth is, we can learn to do this for ourselves.
If I get my way, it’ll be a case of invisible me, invisible you... invisible no more.
Ooh this one hits hard. So much to go back to. Really in awe of your strength and commitment to yourself.