Grappling With the Shame of Having a Rare, Invisible Illness


“Shame is a soul eating emotion.” – C.G. Jung

In 2016, over a period of a few months, I came to realize how much shame I was carrying because I was still unwell more than 20 months after a ladder fall left me with a debilitating spinal fluid (CSF) leak somewhere in my spine. I write more about that journey of learning about shame and the devastation it can bring in this post “The Shame of Chronic Illness and Pain.”

It was a journey of realization and revelation following researching and contemplating what shame actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book “Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.” The book encourages us to find the courage to be honest and vulnerable about who we really are. It also talks a lot about shame and how destructive it can be in our lives and relationships.

“Shame derives its power from being unspeakable… If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown

'shame hates having words wrapped around it. if we speak shame, it begins to wither.' - brene brown

Reading the above words inspired me to write publicly about my realization that I was carrying a lot of shame about the fact I was still very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated, which many who have rare illnesses/diseases can face. That includes many of us struggling with CSF leaks, whether purely spontaneous, caused by an accident or resulting from a labor epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.

Many of us have faced doctors who have not believed us, or, at least, not believed how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)

And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how “rare” we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored.

Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming. Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralizing, shame-filled journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that any doctor will really listen and learn about what they need to do to help you.

Shame is that feeling of “I am not enough” or “I am not good enough.” You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes it’s simply because you have a medical condition or something else going on in your life that most people just do not – or even refuse to – understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a whole person. You think, “Perhaps I am just not ‘good enough’ or ‘strong enough’ to do this. Why can’t I ‘be and do better’ than I am doing… Why do they not understand and listen?”

…and shame begins to relentlessly and often unknowingly eat away at you!

Shame really messes with your mind and emotions and brings a whole spectrum of reactions, from hiding away from other people and getting lost in your own failures and problems at one end to getting angry, blaming others and lashing out for the feelings you have at the other end. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul-destroying emotion of shame is still owned by us and we are the only ones who can truly face it and deal with it.

While we may simply blame others for it, we won’t be able to get free.

I really do believe many chronically ill people, particularly those with a rare conditions or invisible illnesses, can carry a lot of shame from their difficult journey to be heard, supported and helped.

  • Shame that we are ill in the first place and can’t “overcome it.” Like other people can with “normal” or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.
  • Shame when you know the doctors and even sometimes members of your own family and friends are wondering if it’s all or at least partially “in your head.” When the reality is your body is not actually functioning anything like how it should.
  • Shame that however much you try to engage with life and “push through the pain,” you are still so exhausted by it. Daily it feels like you are running a marathon after being whacked round the back of your head with a baseball bat. But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat…and so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to have to get back to the relief of lying flat again.
  • Shame that even when you “look well,” in reality nothing has really changed since last month when you “looked well” for those couple of hours by managing to be “upright” and out or with others at home. (Even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).
  • Shame when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non-subjective medical evidence you need to “prove” to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway.)
  • Shame when someone asks you how the “headache” is and you really want to scream at them, “It’s not just a headache!!! Please stop just calling it ‘a headache!’ It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore…” But instead you calmly reply, “Yes, it’s still there!” (And has been for over two years…every day…most of the day…when I am actually able to be upright.)
  • Shame for the daily feeling that your life is currently so “small and insignificant” because you can’t do very much anymore. So you no longer feel like a fully functioning member of society. And you can’t even fathom what a day with no pain and symptoms feels like any more.
  • Shame that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying flat in bed. (But it’s out of necessity – not a relaxing lie in. At times my bed can feel more like a prison than a retreat.)

And the shame can pile up… Shame upon shame upon shame!

After every new appointment, after seeing another doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work, and after every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!

I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink its toxic claws into my thinking and emotions. I then realize I still have some underlying shame there…or at least its destructive sticky residue is lingering and refusing to leave.

So as Brene Brown advises, I am again choosing to speak it out in this new post. And say to others, “I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”

Every time I read about another soul facing another exhausting battle to be heard, I feel that despair with you! I have been there; I have walked, and still walk, that never-ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.

A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to live life with relentless debilitating neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue and impairment, body and limb weakness, vision issues, tremor, shaking and much, much more. And I have to dig deep daily to choose calmness, kindness, thankfulnesslove and hope despite it all – which is not easy!

I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…and then also feeling the shame of being the one who “couldn’t cope anymore” and was now mentally unwell too. The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.

And that is why I know although I am only one voice. I am one voice speaking for many! Speaking up is one of the things I can still do. So I hope as I say it this way, we can also become many voices united as one.

To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours, we have no real idea how hard the other person’s journey has really been and is. So please don’t assume you know, and we will try our best to do the same for you.

Just because my case is unusual” and you don’t understand it… Just because my physical condition pushed me over the edge mentally… It doesn’t mean it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in my body for a day, you would soon find that I do not have a simple “headache” like the headaches you have probably known that go away with a couple of pills or a good night’s sleep!

I just ask that you please listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know. But I would appreciate it if you could just listen and try to understand, and humbly realize that you perhaps do not know as much as you think you do about what is wrong with my body.

Because… Until you have watched your health be ruthlessly stolen from you overnight with no clear assurance of getting it back anytime soon… Until you have known the agony of misdiagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your rare, invisible condition and subjective pain scales… Or worse, until you yourself have faced being “interrogated” by disbelieving and defensive medical professionals who think they know what in reality they obviously don’t. (We are so very, very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)

You do not really know what it is like!

But when you do “get it” or at least try to, then you are welcomed into a new family of others who do know. Who have lived through the devastation of a rare, debilitating, invisible illness and have walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.

When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone. It gives you more fuel for the fight because the battle is no longer just yours. You are also fighting on behalf of the many. Those walking with you and those coming behind you.

So today I again choose to throw off my shame by speaking it out – so that I can take another’s hand and say, “Yes, this journey is so very tough… Yes, the battle often seems relentless… Yes, we can’t be sure what the future will bring… And yes, you will often wonder how you will ever endure the never-ending storm.” But we can fight together.

Some days I struggle to find the strength to fight for just me. But it’s then I must remember – it’s not just me I fight for. I fight for you, your family member or loved one. I fight for the person, family member and loved one who will come behind me. I fight with and for all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.

We also fight with and for those of you who are facing any challenge in life that feels beyond you at the moment. Because we know what it is like to have to choose to keep on going and keep on living, when some days we just really want to give up and escape it all.

So will you join our fight of many together?

Because it’s then that I find I can dig even deeper. Deeper than I have ever gone before. To find the strength to endure our storm together!

Because this life shouldn’t just be all about me and my struggles and pain. It’s about us finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when every part of my debilitated body screams at me to give up the fight… I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – while also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you as you fall and help pull you back up to face another day too.

And that way we will break away from the shame that tries to chain us up! And dig deep to endure the tough times together!

Life is always better when we face it together.

For more posts about my story of living with a spinal CSF leak please see my blog.

Here is a brilliant two-minute animation about spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website or the US charity website.

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