Managing Expectations When You’re Chronically Ill

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Disappointment is a major part of chronic illness.  It is there when you’re in the process of being diagnosed, going through treatment or management regimes and simply living with it.

It’s probably the big part of the fight to be diagnosed that no one tells you about, but also the part that no one understands – of course you don’t want to be ill, but you want an answer also.  It will help put your mind at rest and reassure you that you are not going crazy.

But managing your expectations is hard when you’re chronically ill and chronically fighting.  You have this new found hope for every doctor and consultant you see, you have a light at the end of the tunnel when your test results come in and you can’t help but wish every new symptoms will bring the doctors closer to finding out what is wrong with you.

The thing is, when I was first going through the diagnostic process, I didn’t feel like this at all.  Because I knew no different and wasn’t pushing for any answers.  It wasn’t until my symptoms – that had previously been brushed off as either “normal”, “stress” or because “that’s what women go through” – became so bad I couldn’t work that I started to kick up a bit.

I was lucky because my main condition, Endometriosis, was picked up by chance.  Yes, I had experienced all the symptoms, but I didn’t even know what the condition really was.  I’ll keep it brief, but it all started with bowel symptoms that then progressed to bladder symptoms too – a lovely combination of constant diarrhea, weight-loss and urine infections.  I saw multiple consultants and had many invasive surgical procedures done, but everything came back normal.

It went on for about a year and a half, and believe me by this point I was desperate for some answers.  It wasn’t until a consultant I was privately seeing believed me that everything seemed linked to my menstrual cycle, that she listed for me a laparoscopy and I had an answer a few weeks later.  I actually had 2.

And even though I have been diagnosed for a long time, I still get plenty of times when I am disappointed and find myself having too high expectations.  Even though I have a reason for my symptoms, it’s still hard when healthcare professionals don’t know whats wrong or why other symptoms are doing their thing.

Take my recent cysts, for example – no one seems to be wanting to do anything other than give me pain relief for a problem that is recurring more and more.  It’s disappointing to know that GPs won’t talk to the hospital or even my own consultant.

Or my most recent laparoscopy – they didn’t find a lot of active Endometriosis, which meant I didn’t have a conclusive answer for some of the pain I’d been experiencing other than the fact they diagnosed me with Adenomyosis on top of everything.  This was partly a good thing because Adenomyosis could account for some of the symptoms, but a bad thing in that it couldn’t give me that 100% “this is what it is answer”.

Or, as another example, why my B12 levels drop randomly.  I’ve had some wishy-washy answers about Pernicious Anaemia, bile acid and IBS but nothing conclusive.

You expect healthcare professionals, be it GPs or consultants, to be able to find an answer but actually there are times when they really don’t have a clue, and that’s not because they are not qualified or don’t have the experience, it’s just that sometimes we chronic illness sufferers are medical mysteries.

You see the thing is, you do have to learn how to manage your expectations when you’re chronically ill.  It could be a new drug you are taking, a new treatment you are going through or another operation, but it’s all pretty much the same – the hope we are given by having these opportunities makes us feel that they will work or we will have an answer.

If you’re reading this and thinking I am being pessimistic, well I’m not – you can have hope and wishful thinking, but I think it’s about realistic and balancing them out.  I’ve learned it the hard way – sometimes I would come home from appointments in the early days in tears because no one knew what was wrong with me or my blood tests would come back as normal, and this is not a healthy way to live.

Here’s how I am managing my expectations;

  • taking my husband with my to as many appointments as possible – it’s good to have a second pair of eyes and ears and also realise what you are going through
  • laying off Dr Google, as you really can’t diagnose yourself or use it as a god grounds for evidence
  • try not to overthink any symptoms.  If I’m focussing so much on one particular symptom, I’m bound to either make it worse or think it is effecting me/changing more than it actually is
  • talk to people when things are getting on top of me or I am worried about something – that saying “a problem shared is a problem halved” really is true!
  • be honest with yourself and others

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