Home Health An honest look at what it’s like to live with an undiagnosed illness
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An honest look at what it’s like to live with an undiagnosed illness

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Your identity is comprised of many different things including: nationality, gender, age, birth order, your specific personality and talents as well as many other things.  For example, I might identify myself as a white, 33 year old, married female from the UK.  That information, those ‘labels’, tell you something about me.  It enables you to understand me a little better.

Okay, so you may not know much about me based on that information alone, but the more I describe myself, the more you would gain an understanding of who I am.  For example, I’m artistic.  That information (label) now puts me into a category of the ‘artistic types’.  You now know that I’m more likely to enjoy artistic endeavours (such as art, photography, and music) rather than things that are scientific or mathematical and, if you do think that, you’d be right.

Likewise, labels help us understand an illness and what a person is going through.  Living with an undiagnosed illness (ie. not having a label to explain the symptoms) is extremely hard – for those with the illness and for those living with the person who has the illness.  We like ‘labels’.  Labels give us a category and help shape our understanding of a subject.  For example, the label ‘Alzheimers’ comes with an understanding of the symptoms and challenges involved.

Although being unwell is not something anyone would want, at least a label gives an understanding of what to expect, how to deal with the challenges and how to treat the problem – if there is a treatment.  It also enables friends and family to be more supportive and sympathetic to the challenges that are faced because there’s at least some understanding of what’s involved.

For those who are as yet undiagnosed, it’s a very different story.  There is no label that encompasses the symptoms experienced so that the patient and others can understand the struggles and why they’re happening.  There is no treatment because you can’t treat something that’s unknown.  It’s harder for friends and family to accept something’s wrong or know how to respond/interact when the doctors keep coming back saying they can’t find anything ‘wrong’.  It’s easy to ‘give up’ on a person who often doesn’t make it to social events or activities due to not being well enough – especially if there is no ‘label’ to justify ‘why’ that person is unwell.

Interestingly enough, there are over 7,000 rare diseases and it can take doctors up to 5 years or more to reach a diagnosis for some patients.  In fact, some patients may never receive an accurate diagnosis.  Since rare diseases are ‘rare’, it means that doctors aren’t as familiar with them and may know nothing about them at all.  If this is the case, your doctor isn’t going to be able to reach a diagnosis.  Hopefully, he’ll send you to specialists in certain areas of problematic symptoms and they may be able to track down an actual diagnosis.  However, this may become more difficult if the symptoms cross a range of body systems or your symptoms don’t present in the ‘typical’ way.

Before I was given my diagnoses of POTS, I struggled quite a bit with not knowing what was causing my problems – and, even though I have a wonderful husband, family, friends, and church, there was still that sense of isolation, not feeling understood by some, wondering what people were thinking, feeling like giving up when the tests kept coming back negative and feeling discouraged when your doctor says you just need to learn to ‘live with it’.

I would consider myself a pretty secure person in a good situation as far as social circumstances go and yet I struggled with these temptations.  For those who have unsupportive family and friends and less than desirable circumstances, I can imagine that these temptations are even greater and all this has to be dealt with on top of the actual illness itself.

I had gone from an active (dancing regularly, working out about 5 times a week, travelling, and attending social activities) person to someone who barely had the strength to hold my arms up to type on the laptop when having a ‘bad day’.  Since my symptoms seemed to have no pattern, I couldn’t predict when I’d feel unwell. For example, a busy day out didn’t necessarily mean I’d pay for it over the next few days but it might.  (For me, it’s like flipping a switch and I can go from feeling pretty good to barely being able to move within a matter of minutes.  So, just because I was fine 5 minutes ago, doesn’t mean I’ll be okay 5 minutes from now).

Therefore, I was no longer able to make commitments, go out on my own without taking into account the risks of having problems while out, or do many of the activities that I used to love doing – like dancing or singing at my church.  I often couldn’t make it to social activities, church, home group, or visit my family.  Even if I was well in the morning or afternoon, I could go downhill very quickly and without warning so I’d end up being a very ‘last-minute’ kind of person when it came to doing anything.

For someone who doesn’t like letting people down, who likes to keep to their commitments and has the desire to be involved in things, this was a big adjustment and has been a hard one.  My sister said it well when she described it like a grieving process – the acceptance of the loss of my abilities and the things I used to be able to do as well as the loss of my dreams and plans for my future.

Not knowing ‘why’ I was unwell and what was causing these symptoms made it harder because there’s no context or framework for why I was feeling bad.  It made it difficult to explain to other people why I’m not working outside the home or why I can’t do certain things that don’t seem like a big deal – especially as I still ‘looked’ like a healthy individual.  Also, the rollercoaster of feeling ok and able to do things to feeling bad and unable to do anything was hard for me to understand, let alone anyone else.

It gets to the point where getting negative tests are ‘bad news’ rather than ‘good news’.  It’s easy to think that it’s a good thing you don’t have ‘such and such’.  However, the problem doesn’t go away because the results were negative.  You just still don’t have an answer and possible treatment.  There comes a point where you don’t care what ‘it’ is, you just want to know what ‘it’ is so you can deal with it and not be left in limbo!

The reality is that the medical profession still has much to learn about how the body functions and that, while huge progress has been made in recent years so that amazing things can be done that we can hardly even imagine, there are still limitations in what doctors understand of how our bodies work.  So there will be people who may never receive a conclusive diagnosis and will live in this state of  being undiagnosed for their whole lives.  For some, it’ll be many years before the doctors can work out what’s wrong – maybe new technology needs to be invented in order to work it out.

For those still in that place of being undiagnosed, I feel you.  I understand the frustration and discouragement. However, may I encourage you with the words from Psalm 139:14 that says ‘I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.’  Also Jeremiah 29:11, ‘For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.’  God knows exactly what’s going on in your life and body and has a good purpose for it, even if it doesn’t seem like it.  Trust that He will use this in your life for His glory, for your good, and for the good of others.

For family and friends of those living with an illness that has no label at this point, please be extra sensitive in your interactions with them.  They are especially vulnerable to feeling like they’re not being taken seriously and are potentially more easily hurt and discouraged by words and actions that minimise, or communicate a disregard for, what they’re going through.  Try to put yourself in their shoes and imagine what it’s like to not know what’s going on with your own body, why you’re in pain or so tired, etc. and no one knows how to treat it and there’s no end in sight – where your life doesn’t make so much sense anymore because you have no label or category that explains what’s going on.

If you have an undiagnosed illness, please find a warm welcome in our facebook group, Health Warriors Together.  Sometimes it can be hard to find a support group when you don’t know what’s wrong but here you’ll find a group of people suffering with a variety of different things all wanting to support and encourage one another.  I look forward to seeing you there![/vc_column_text][/vc_column][/vc_row]

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Demelza Marie Demelza is the founder of this website and suffers from health conditions herself. As a result, she wanted to create a place where fellow sufferers could share ideas, tips, inspiration, fun, and more in a safe and friendly environment. Her hope is that this website is a small refuge in what can be a challenging life with chronic illness or disabilities. She is artistic and enjoys connecting with people. She is also passionate about God and biblical discipleship.

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