Is it really that bad?

How many people among the chronic illness community have ever been asked this question? I know I have. And sometimes it's not even a question, sometimes it's a statement - 'It can't be that bad. Just get on with it. It's not like you're dying. Be grateful you don't have cancer.' I know the feeling of gritting a smile through your teeth and stopping yourself from ripping that persons head off.

These are the types of statements I see over and over again. A lot of people can't grasp onto the simple concept that two people can go through the exact same thing, but handle that situation differently. Another person may experience something that completely knocks them off their feet, mentally destroys them for the rest of their lives, and that something could be the smallest of things. Yet someone else could go through the most horrifying, traumatic experience imaginable and come out fine the other end. If a member of my family, or a friend, has a common cold, an infection, anything like that, I understand and sympathise, because we've all been there and we know how crap these things can make you feel. I would never tell a friend who had a cold to get over it, because I HAVE THIS, and you have NO IDEA. Just no. It's so, so disrespectful.

We are all different. We all handle things differently. Every person who has any kind of physical or mental illness will experience it their own way. People need to be there to support their friends, family and loved ones. Not question their sanity. Not make them feel badly about things they can't control, and certainly not to ask them if their pain is really that bad, that they should get on with it.

Don't make ANYONE feel that their condition(s) aren't relevant by comparing it to another, completely different condition. Of course, people are grateful they're not dying, but comparing their illness to a terminal illness does not make their illness any less painful, or real. And what a lot of people don't understand is, a lot of chronic illnesses are actually life threatening and terminal.

The problem with chronic illness is that there isn't much awareness. And of course, there is the issue of some chronic illnesses being 'invisible' (I will talk about invisible illness in another post) Sure, people may have heard of fibromyalgia, but you can bet most people don't understand the condition or know more that one symptom. If I mention Lupus to someone, I can see they have no idea what it is, and I have to try and explain it, which is quite difficult. Let's use lupus here as an example - now my lupus has never flared to the severity where it attacks my internal organs for the sake of it. For me, it's in remission and has stayed that way. I mostly experience more common lupus symptoms such as skin sensitivity, rashes, muscle and joint pain, and so on. But this could change at any point, and that is very, very scary. It only takes one second for lupus to come out of remission and decide to attack any organ in the body, and for some people, this can mean organ failure, and lead to death.

For people with autoimmune diseases, something like a common could could literally kill them. And that is the same for anyone with an illness that compromises their immune system. More commonly we hear about, not the actual condition killing a person, but complications and infections that arise from an illness. There are so, so many chronic illnesses that are life threatening and terminal. People just don't know about them. In the media, we don't hear about people dying from lupus, or Multiple Sclerosis, ALS and so on. In fact, a lot of people had no idea what ALS was before 'the ice bucket' challenge. And sadly, even those who did involve themselves in the ice bucket challenge weren't doing it to raise awareness, and still have no idea why they tipped a bucket of ice over their head. Nevertheless, it still raised a ton of awareness around the world, and that's what a lot of us chronic illness bloggers are trying to do, not only because it's an outlet for ourselves, but it gives us a chance to help others, to talk about chronic illness and get the word spreading.

Yes, our conditions, our pain, really is that bad. If you follow us on social media, you might have seen my post last night about my endometriosis flaring. Now, anyone with endometriosis will say exactly what I say, I wouldn't wish it on anyone. Some days it's manageable, the lingering period type pain is usually always there, and every so often the sharp stabbing pains. But when it flares, if you don't have endometriosis, but you've had children, I compare endo flares to  the early/middle stage labour contractions. And it's horrible - we have no no gas and air for it, no epidural, just regular pain killers that don't do much to help. BUT, just because last night I knew that having an endometriosis flare wasn't going to kill me, it didn't make the flare any less relevant or painful or real. I was in agony, and no amount of telling myself, well, at least I'm not dying, made it any better.

You wouldn't tell a woman giving birth to stop screaming, it can't be that bad. Get on with it. And the old saying, you wouldn't tell someone with a broken leg to get over it and walk. Same for mental illness. Sometimes mental illness can be as soul destroying as a physical illness. The issue is, when you have an illness, and someone makes you feel so small, weak, or like your condition or pain is irrelevant, that in itself makes a person feel horrible, makes them feel guilty for being sick, makes them try their best to 'get on with it' and push themselves too far, which in turn makes them more ill.

I know this myself. I'm fortunate to have a good support network and understanding friends and family. Unfortunately, a hell of a lot of people who suffer, do not have that network of support. And this is what Spoonie Talk is all about. To give you that network and that support, to reach out to you and say, YES, your pain is that bad and we believe you! Your condition is relevant, you are not going crazy, and do not let yourself become a victim of other peoples ignorance!  None of us are perfect, and we all need help and support. If you would like to join our closed spoonie support group, join our community and you'll be sent the link to join. The group is completely private and only members of the group can see your posts and comments. It's not limited to certain illnesses. You are welcome no matter what conditions you have.

As Claire said in her last post, know your spoonie support network, even if it's only online. We are not in this alone, we are in this together! 

Much love,  Stacey x