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What we don’t talk about: Depression, disability and dying

We all ignore chronic disease, until we can’t

We all know someone with chronic disease. And we all know someone who is hiding chronic disease, and potentially multiple chronic diseases. But most of us choose not to think about it until we have to: when we, or someone we love, is diagnosed.

I am guilty of this. I didn’t give a damn about chronic disease until I ended up with one myself.

The blogosphere boasts a vibrant, helpful community. You name the disease, there is a support network. I am grateful for the support I receive – both public and private – online. It makes a significant difference to my wellbeing.

But there is more to chronic disease than the everyday sharing that is so common online (and that I partake in most days). Living with a chronic disease, particularly one of the ‘grave’ ones like MS, sometimes requires more support than the opportunity to share about diagnosis and treatment, about the bad days (and bad weeks and months), about changing medications and coping with side effects.

Because the emotional and psychological turmoil of living with chronic disease – of not being able to escape a disease – is difficult. And it stays difficult. And unless one lives in denial (which believe me, it is quite a happy place to be), chronic disease forces one to face things that one might not have had to before.

Depression. Disability. Discrimination. And even dying.

And we don’t talk about the terrifying but possible things

Those of us with a chronic disease, including the progressive autoimmune and neurological diseases like MS, Alzheimer’s, Parkinson’s and Lou Gehrig’s, face a different set of statistics than the generally healthy.

There is a significant amount of grief that can’t be avoided. Eventually, it has to be dealt with. Regardless of how individuals choose to deal, there is one thing we all need. And that is the opportunity to share what needs to be shared – even if it is almost impossible to talk about.

  • Have you ever talked to your parents about dying before them?
  • Have you ever talked to your sibling about the medical decisions you want them to make?
  • Have you ever talked to your partner about what disability may do to your relationship?
  • Have you ever talked to a child about the morality of passing on a disease?
  • Have you ever talked to your loved ones about voluntary euthanasia?

Most of us haven’t.

But many of those with progressive chronic disease have thought these or similar thoughts. They just don’t share them.

For some of us, sharing these thoughts is helpful

I have received preliminary funding and been awarded a Wheeler Centre Hot Desk Fellowship based on my proposal to talk about the hard things (I have also blogged about it here).

In the second half of 2015 I will be interviewing people with chronic disease about the grief they face and the thoughts they don’t always share. Interviews will be published – anonymously or not – on a new blog devoted to this content and added to over time: a living insight into chronic disease. Comment and community by family and friends will be encouraged.

These interviews – and the honesty within them – will hopefully provide a forum to communicate all that is so hard to say out loud.

The goal is not to be bleak; it is to be open and honest. There is freedom in the truth, after all.

If you, or anyone you know, may be interested in participating, email me at LadywithMS@gmail.com or tweet me.


3 thoughts on “What we don’t talk about: Depression, disability and dying

  1. Hi Astrid

    Your project sounds absolutely wonderful.

    I know people at National Disability Services, if you would like to use that network to advertise for possible people to interview.


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