Chronic illness is a silent beast!
The invisible struggle with chronic illness is something very real for us people concerned; day in and day out. We are dealing with this silent beast, very often feeling pretty much alone. Being dismissed by doctors, failing to take our symptoms seriously, misunderstood by close family members, who just don’t get it are a common experience.
Unfortunately!
On top of all of that, there are people who in addition are caught in a toxic relationship with a narcissistic partner, they can’t afford to get out of so easily. Exasperating the symptoms of the chronic illness.
Sadly, I know a few friends, who have to deal with this excruciating combo.
In my opinion, for people dealing with chronic illness, it is even more important to become visible, expressing themselves in a creative way. So that others can start seeing them as a valuable person again. And if wanted sharing their mighty struggle as well.
Doing so can relieve a lot of additional stress someone with chronic illness might be dealing with and it makes other people who are faced with the same feel more seen and less alone. Apart from the fact of creating awareness for those people who are ignorant to the issue because they have the luxury of really good health.
That’s why I would like to tell you about Cyrus Newman and his new blog he just started called Chronic Barry. Apart from that he also started a private Facebook Group for fellow sufferers from mainly Me /CFS or any other chronic illness.
I had the pleasure of meeting Chris in person a little while ago. We had a lot to talk about, sharing similar struggles with ME and chronic illness in general. Personally I am dealing with a combo of ME and Hashimoto’s along with other things.
So far Cyrus has written two poignant posts about his condition as well as very personal experience with the same. He happens to be a great writer and I see this blog of his going far. Hopefully helping others feeling validated and less alone. Which in and off itself can already release some of the additional anxiety I believe.
I think one of the toughest things about many chronic conditions is their invisibility. Most of us look very healthy on the outside, while we silently suffer a lot of pain on the inside.
For me the process of chronic illness has been steady and slow, dealing with Hashimoto’s as well as Me for over 15 years with it getting worse on many levels. So far I have tried many things, which ultimately didn’t really work.
Cyrus story is different, for him the change was more drastic and I guess all consuming. It happened four years ago as a result of having caught some sort of a virus. Cyrus went from being the bread winner to being incapacitated. The change in many ways was more drastic.
The difficulty of dealing with this invisible, chronic beast, is that sometimes you wonder, whether you should still tell other people or not. Because it is exhausting having to explain yourself all over or getting well meant suggestions of how to improve the condition. But if you stay silent, you might be judged harshly by others, not understanding why you don’t participate in life like they do.
And then there’s of course living with pain on a daily basis, sleeplessness, having to deal with new , mysterious symptoms. Which often in return are dismissed by the doctor. What else? Additional anxiety, heart racing, overwhelm. Wanting to be alone, but not. Everything being too much to handle.
It’s like you’re not part of this world anymore, you’re in the in - between space. Not really alive and not dead either. Imagine, how isolating all of this is.
You’re in a bind, a catch 22.
On top of that many of us have to deal with being constantly dismissed, shamed and invalidated with our experiences. Being told in direct or indirect ways by others or society:
‘You’re lazy.’
‘You’re not worthy as a non functioning member of society.’
That’s definitely not helping, let me tell you.
And, you know, the people I know who are dealing with this invisible beast are beautiful, kind, creative, talented souls. And that's why to you, fellow travellers, please find a way to express yourself. Find a way to write, paint, or do a video. Whatever it is, just express yourself creatively. Whether it is talking about the illness or simply sharing your talent. So, that you can feel a sense of purpose again, being seen by others.
It’s important! And I personally believe a building block to healing or at least removing additional stress.
When it comes to healing, there’s a lot of unsavoury things out there, and we must treat carefully. Especially some ‘New Age’ offers being handed over with a good dollop of toxic positivity should be a red flag.
Personally I have tried out a lot of things in the past, which haven’t really worked. At the same time healing is possible but involves a lot of hard work. I know, because I just talked to a friend of mine I know since 2019, telling me she had recovered fully from debilitating ME. She was bed bound and hardly couldn’t do anything with two kids and a husband, wanting to be cared for.
It provided a glimmer of hope for me personally, when she told me she is very healthy now. My friend did a specific program and worked at it for nearly two years with a lot of commitment.
Everyone has to find their own path, balancing the paradox of accepting the illness, while also working at improving things as much as possible. That’s how I see it.
I asked what the main principles were, she thought afforded her the healing. And I am sharing them with you here, so you can feel a little encouraged, not giving up on yourself completely. But committing to a path towards more health instead.
Here they are and one they can be viewed as two steps in a way; First, Second:
Step 1: Calm the nervous system to safety
Step 2: Attune to yourself - make space for your needs and your emotions
Of course this sounds very easy and as you can imagine, there’s a lot of exercises involved, as well as discipline.
But hopefully it provides a rough map, a way forward. Any improvement, as tiny as it might be is a good one. Feeling less stressed and anxious is already a big step forward for example.
So, I leave you with what my friend told me: