Living with Invisible Chronic Illness

It's been about 15 months since my adenomyosis/endometriosis diagnosis.

When I was first diagnosed, it was just a massive relief.  I finally had some light shed on my more recent, severe issues plus decades of other issues.  I didn't really feel sad.  Just grateful to finally have some answers.  I finally felt some kind of validation.

But what these conditions mean for me in real terms are something else.  I still haven't processed this reality.  And it's easy to understand why.

The 'Tired Mum' trope does not serve me       

Firstly, I am not very unwell all of the time.  I am exhausted, but this is something that doesn't always register with myself, or others as relating to my illness.  I'm a Mum.  Lots of Mums are tired.  I'm a working Mum.  Working Mums are tired.  My pain levels are erratic.  In the past they have been so bad I could not go to work because I struggled to stand up for the length of my shift.  At the moment, my pain is manageable with minimal pain relief.  I have dyspareunia which is fairly bad all the time, but isn't something that affects anyone besides myself and my partner.  In the overall scheme of things, it doesn't seem all that bad because I am still able to work and look after the kids.

Secondly, I don't talk about it much.  It's not that I'm embarrassed, it's just that it's awkward.  Those closest to me seem bored, or even annoyed if I talk about it.  And when I talk to those more on the periphery of my life it feels as if they think it's a ploy for sympathy.  Almost everyone* I talk to has a level of 'ways we can fix this' in what they say.  Or a resigned boredness in hearing what I have to say yet again.  And that's hard because these are chronic illnesses.  While there are things I can do to minimise some of my symptoms, there is no cure.  This is my life.

The reason I'm writing now is because I read this article recently and saw, for the first time, this cycle:

And it just resonated.

Since the onset of adenomyosis, this cycle has shaped my life.  And diagnosis of my illness has not changed that.  I'm equally stuck in an exhaustion cycle.  I feel guilty for not spending enough time with my kids, my partner, my friends and family.  When I try to spend more time in these areas, I get more exhausted which makes it trickier to spend any more time and makes me feel like I'm failing as a partner/Mum/friend.  This reinforces the anxiety I face in attempting to spend time with friends.  And this reinforces my sense of isolation.  Equally, I know that if I exercise more, it will help me manage my weight better.  But to have extra money to go swimming (the easiest exercise for me) I need to work more, which makes me more exhausted, and then struggle to have the energy to exercise.  Being stuck in this cycle really sucks!

And the only place I can talk about this stuff is online.  Online it's easier to find people who actually understand.  Equally, I can take my time in trying to articulate how I feel.  Exhaustion and anxiety make real life conversations difficult and frustrating as I often struggle to convey in real time what I mean because my brain is too tired.  I also cry more easily because of the hormone overload, and this makes IRL communication even harder.  Where I used to see friends regularly enough to talk through the big stuff, these days this feels increasingly difficult.  For me, online support groups and friends are truly the best support.**  This is also why I blog.


*          *          *          *          *          *          *          *          *          *          *          *         

I have no idea how to exit this cycle.  But I do have some ideas about what would help me, or might help others like me.  You can find some more general ways of supporting someone with chronic illness here.  Here is my wishlist.

While I know many of these symptoms can
be attributed to other things, with 10% of 
all women suffering from this condition,
surely it's worth looking into sooner?

• More recognition of chronic illness by health professionals
  
  It should not take so many years for so many of us to receive a diagnosis (8 years is the average time for endometriosis).  Prior to a diagnosis I felt (and was often called) a hypochondriac, too 'sensitive' and a drama queen.  Basically, I was told there was nothing wrong with me and all the issues I was having were in my head.  This does not make for good mental health!  I know GPs cannot possibly know everything.  But I feel like if they were under less time pressure, they could listen better and would have a better chance to accurately assess symptoms and refer on as necessary.
  
  We should not have to push to expect regular follow up post diagnosis and a more supportive health system.  Even with a diagnosis, I feel like a drug seeker when I try and access any meds stronger than paracetamol.  There are women with my condition who are bedridden.  While I am not bedridden, it does not mean I am not sometimes in a great deal of pain.  If I didn't regularly have my pain minimised by health professionals, and if they actually checked in with me on how I was going with some regularity, it would make a huge difference to my self esteem around my illness.
• More awareness generally
  If there was more general awareness of many chronic health issues it would help make those of us with them feel more accepted by society.  What we live with would be legitimised, so our diagnoses might not affect our self esteem so much.  I feel like I have to be my own cheerleader much of the time, and this is difficult to maintain given my low energy levels.  More awareness would allow more empathy to filter through and hold us up.  It would make some space for easier conversations which would make it easier to seek support.
• Illness specific subsidised counseling
  I tried going back to regular (free) counseling through a local womans centre (free) because non-community counseling is damned expensive!  The place was lovely, but the lack of time flexibility meant that it was difficult for me to go due to childcare and work commitments.  I did not want to have to see someone else, as would have to explain my diagnosis all over again, which is difficult.  If once diagnosed you were referred to counselors that specialised in certain chronic illnesses, this would be so much easier to negotiate.
• Support groups for partners
  It is not easy living with someone with chronic illness.  This is apparent.  It's something that causes constant friction in my relationship, and I believe this would be helped greatly if there was better support available for partners of people with chronic illness.  Whether it takes the form of subsidised counseling, online groups or a meet up - I do not know.  But I know having something would definitely make it easier for them to also feel less alone.
  
  
  This has gone up to $21.15 this year 
• The Living Wage
  
  If I earned a living wage I would feel less guilty about working part time and more able to support both my family and my health needs.  I think this is particularly pertinent for fairly functional people with chronic illness as I suspect (like me) many choose the kinds of work that require less energy or responsibility to better manage other aspects of their lives**.  For me, this would make a difference of around $40 per week.  This doesn't seem like much but would make a huge difference.  It would mean I had enough to spend a little more on health or childcare or to support my general wellness.  And I am speaking from a position of privilege.  I cannot even begin to imagine the difference this would make to someone in my position that was a sole parent, or sole earner.
• A Decent Sickness Benefit
  Equally, if I were unable to work due to my chronic illness I would hope there was a decent financial support available for me.  My mother is in exactly this position, and is still expected to be seeking work even though some days she can barely stand up (due to changes to WINZ by our prior government who eradicated sickness benefits).  While benefits are now being indexed to inflation, as yet no changes are being made to bridge the gap from the many years prior that this did not happen.  Currently, it is very difficult even for those who are well to maintain basic health on the money received from a normal benefit in New Zealand, and even harder if you have an existing illness that requires ongoing medical treatment.
• A bit of kindness and respect
  Just be kind
  
  
  
  My illness does not make me incompetent.  When people ignore my feelings or experience, it does not make me inclined to trust them.  And the more often this happens, the less likely I am to reach out for support generally.  This is a pretty common response.  If you care about someone with chronic illness ask what we need in terms of support.  Respect our boundaries and limitations, and understand that they are in place for a reason.  Just listening and respecting us really does make a world of difference.

*  Besides my Mum.  Having been through similar health stuff she is pretty good at understanding how I feel.  But equally, we need more than just each other as each of us have limited energy resources which is tough.  We both want to help each other so much, but we can only do so much without making ourselves more ill.  And other friends with chronic illness get it too.

** At the moment also I have more peer support at work in terms of my illness than I think I would have anywhere else.  It's one of the pros of being in an almost entirely female workplace.  The downside of this is the gender pay gap associated...