Not "hardcore" illness that have you in a wheelchair or agonising in bed or in hospital, or losing your hair through your treatment or losing a significant amount of weight, all of which I am sure you can't understand unless you have lived through it yourself or through someone close to you.
Not completely ill, not completely well
I feel that it is easy to think in black and white terms and judge that, because an illness is not visible, the person is actually well. But what about the in-between, the shades of grey, the people who aren't exactly completely unwell but aren't completely well either?
Don't get me wrong, I wouldn't trade what I have for any of the above, but if you see me for a couple of hours in the day and I am joking and laughing with you and am seemingly doing "normal" activities, do you assume that this is how the other 22 hours of my life are like (or at least the waking hours)?
My personal condition
Let me share some of my personal suffering.
I was diagnosed with uterine fibroids 2 years ago, which apparently 70-80% of women have, with varying degrees of symptoms. Many don't have any symptoms or only mild ones, but many others do.
Mine cause heavy bleeding. My periods last for 2 weeks every 4 weeks, and during each monthly period, I lose around a litre of blood. It is the equivalent of donating blood 4 times per month, every month of the year, for 2 years (so far). Sometimes it means going to the loo every 15-20 minutes because the blood has soaked whatever protection you are using.
If you have the same issues and want to know what my strategies for this are, please let me know.
The result is that my body can't produce blood as quickly as it is losing it, and my red blood cells count is very low, putting pressure on my heart to pump faster to make the fewer blood cells carry oxygen around my body. The body uses iron to produce red blood cells, and my iron stores are low: this is anaemia.
Getting on with it
I spent the first year and a half of these 2 years working 50-60 hours a week in my accounting job, ignoring my symptoms as all the doctors originally dismissed my condition as common and benign.
On the doctor's prescription, I took iron supplements to help my body produce red blood cells and just "got on with it".
I felt exhausted most of the time but I got used to it.
Six months ago I sighed in annoyance when I realised that when I lightly exerted myself, such as climbing a small set of stairs or walking to the end of the road, my heart was pounding and palpitating, lactic acid was pumping into my legs and I felt faint. I thought of the amount of work I had and my strategy to tackle my new project at work, and thought I should quickly check it out at the doctor's and get back to work.
It turned out that my red blood cell count level was a third of the normal level and I was at risk of a heart attack. The GP rang me at 7.30pm on a Friday and told me to pack a few things and go to A&E to have a blood transfusion.
My response as I was cooking dinner and looking forward to chilling out after a long week was: "can this not wait until tomorrow?"
How's that for "getting on with it?".
After my blood transfusion (over 3 days at the hospital of waiting, chasing for my treatment, sadness looking at other ill women in my ward), and a few more weeks of trying to get back to normal, I realised that I had actually burnt out, and that the acute anaemia was how my body was telling me it had had enough and forced me to stop.
Once I gave in to the need to focus on my health, the exhaustion just submerged me. I haven't been able to function without at least 12 hours sleep a night.
The blood imbalance and the deeper questions that the experience raised have triggered feelings of depression and anxiety.
I found "proper" care in the form of an upcoming surgery to remove my fibroids, and I am currently undergoing a 3-month GnRH (hormonal chemical menopause-inducing) treatment to shrink my fibroids in order to facilitate the hysteroscopic myomectomy surgery.
I won't indulge in useless NHS-bashing, but we do have to question why the system waits until the illness reaches an acute form to give the patient the right level of care.
The N.I.C.E. has been encouraging patients to take the initiative to understand their health conditions and treatments in order to support their care, so I have my own copies of blood test results, and prompt my GP for any change in medication, or new blood test requirements that I may think I require. This has given me a sense of control and ownership over my health, but has also been putting more pressure for me to think proactively and chase people while I am ill.
Since I started the GnRH treatment a month and a half ago, the bleeding has not stopped. Generally, if I stay at home and do nothing all day, the bleeding will be minor. On the days that I decide that for my sanity I need to do something and lightly exert myself by taking a short trip to the shops, wheel my trolley around and carry a few groceries home, or other such light mundane activity, within 24 hours I get a backlash of bleeding equivalent to the quantity of one blood donation.
I am lucky, but vulnerable
I am lucky, that there is an end to the tunnel with the surgery in a month and a half, that my company has fulfilled its duty of care over and above expectations while I have been off work, that I have a wonderfully supportive partner and loving family and friends who are happy to see me and forgiving when I cancel plans at the last minute because I am just in the middle of an uncontrollable episode of heavy bleeding or just too exhausted to get up.
In the fewer waking hours of my days, I am putting up with my clouded mind, my sad feelings of inadequacy for being unhealthy in my youth, my guilt for not contributing in the world while I am ill, my frustration for not being able to concentrate on simple things like light reading for more than five minutes, my anxiety and self-doubt about how I have been living my life to get to this point, and trying to find healthy outlets and healing strategies to get back on top after my surgery.
Denying our vulnerability
The world sells to me the wonderful stories of people who had much worse illnesses in life than I have, and who beat their obstacles to become Olympic athletes and other incredible achievements. Such stories are inspiring but could also deepen the feelings of inadequacy if you are not able to measure up to these wonderful people.
I am just saying, everyone has a degree of vulnerability, and different people have it in different amounts. Everyone finds courage in their vulnerability in different ways, each person has their own version of how to "get on with it", and to sneer at others' vulnerability is a way to deny that we ourselves are not invincible.
David Whyte expresses this beautifully.
To run from vulnerability is to run from the essence of our nature, the attempt to be invulnerable is the vain attempt to be something we are not and most especially, to close off our understanding of the grief of others.
Full passage (highly recommended reading):
There has been a lot on social media lately to raise awareness on mental illnesses. Unless you have lived through it yourself or through a close one, you may not understand that the other person is going through hell in their mind and can't just "snap out of it".
A wonderful talk by Andrew Solomon on depression:
A few hours of normality in my day
When you see me behaving "normally", laughing and joking for 2 hours in the day, this is what I've most likely had to do to psych myself up for it: I've spent 12-14 hours sleeping, and the remaining waking hours chasing medical appointments and monitoring medication, trying to deal with heavy bleeding, finding the best way to nourish my body to sustain what it is going through, finding a useful activity for the day that is not too physically challenging, and finding healing for the disquiet in my mind through meditation, drawing, reading and just sitting on the couch looking at the birds and the trees in the garden.
And I am grateful for those few hours of normality in my day.
Compassion and love
I know that I am not alone in my in-between suffering, and I request that we all appeal to our compassion when we feel like sneering at how others should "just get on with it". Because we have no idea what the rest of their day has been like, or what hell they might be going through in their lives and their mind.
Be compassionate today, spread your love.