One of the most difficult elements of living with a chronic illness is the ability to convey to others what life is really like.
I have learned over time that people, in general, can only ever relate my experience to their own frames of reference – be it pain, tiredness, fatigue, depression, anxiety – which is no bad thing, it’s just how we operate. It’s also one of the reasons I am so
oversharing vocal on this blog about the reality of chronic illness. It lifts that veil of misunderstanding, it makes other people realise they aren’t alone. Also, I guess there must some element of blogging it all out being cathartic. I have certainly had the pleasure of connecting with some amazing people as a result of my online overshare, for which I am honoured.
The difficulty of empathy is that to the outside world my life can look full, vibrant, NORMAL. In many ways it is. But the gaps are the unseen bits, the other parts of reality that are hidden, behind closed doors. These ugly sections of reality are saved for my family, my partner and my daughters who take each step with me, my closest friends who are part of my daily life. And you, dear Diva Reader, of course.
Each person’s experience of a condition can be so very different too; where one woman can had endometriosis but be able to function normally another is almost disabled by it. Comparison with others can be so detrimental and void.
This week I did 2 runs, I won a new client and had a very promising business meeting with another contact, I planted seeds and veg at Farm Club, and went smoothie making with the Minis, I went to a vintage tea party hen “do”….
See? All good, isn’t it.
But the reality is this:
I did 2 runs, and had to pay for 2 days after each one with sickness, joint pain, whole body fatigue and tiredness.
I went to Farm Club several times, each time I had to come back and be on my sofa for at least an hour with a lot of codeine to get pain and fatigue under control. I left early this morning as I could feel my glands swelling up, my pelvic pain hitting un-tenable levels, and I have spent most of the day in floods of tears and desperation to escape from an ill body.
I went to the hen party, in tears in the way from pain and fatigue, and had to spend the entire evening when I returned on the sofa barely able to move from pain and tiredness.
You see the thing is, anyone who sees me out and about in daily life will only see me for that slice of it; the rest is under a duvet, the tears are shed alone. Living in an ill body is crippling for mind, body and soul, and my sadness at not living the active life I want to eats away at me every day.
I find it so very difficult when people say that they are tired too, or they have pain and “just get on with it”. My pain and fatigue is so extreme, so very hard to describe that the isolation of being unable to share it is just ongoing. Also, it’s mine, no one can share it with me or take it away. It’s with me. Like a constant personal hell.
I know so many of you out there, my team chronic illness ladies will understand the gaps we fall between – those unseen spaces in which life exists, as it certainly isn’t lived any more.
There is nothing anyone can do, and nothing anyone can say, which adds to the loneliness of sickness. Each day is another battlefield, another 24 hours to try and just get through it. Because what else is there?
Today my beautiful daughters sat with me and gave me the most soul warming cuddles as I sobbed in pain and desperation. They are my reasons and my strength, and are always here in the gaps.
If you made it this far, thanks for listening. x