The reality of being mentally ill and having an Undiagnosed Chronic Illness

Mental illnesses often go hand in hand with Chronic illnesses. It’s part of the territory. It makes a lot of sense really. Through all the fear, the confusion, the loss of life quality, friends, supporters. Having all of your peers move on with life, seeing them progress and there you are. Still sick. It makes sense that the majority of people with a chronic illness also have some sort of mental illness.

Having both anxiety, depression and at least one diagnosed chronic illness is a confusing situation to be in. It’s denying that your sick, feeling invalid because you don’t have a diagnosis but not being able to speak to doctors. Not having that magic way of talking to them to make them test you, diagnose you and take you seriously. And actually just freezing up and panicking every time you see one.

It’s feeling guilty for not working because you have a few good hours, days, maybe even a good week. But the reality is you’ve spent so long stuck in bed from grinding fatigue or unable to focus and be a good personality to work with from severe pain or nausea that you’ve fallen into an even deeper depression than you were in before hand.

It’s feeling like there’s no out because you don’t feel empowered to fix it, so it will never get fixed. It feels like your always going to be stuck in this cycle of physically ill, depressed, anxious, physically ill etc. It’s an incredibly terrifying point to reach. You know there’s something wrong with you every day and chances are it’s only dong to get worse because of your inability to do anything about it.

Which may be why you still find yourself denying it. Because you don’t want it to be true. You want a normal life. You want to be where your many a lost friends are now. Talented beyond belief with jobs they are actually getting successfully paid for. Friends to socialise with, a family they are close to and on track for a first class degree. But then you also don’t want to get better physically because being physically ill gives you an excuse. To not work, not do x,y or z. All of those things which trigger your anxiety. That historically you haven’t been able to cope with. Even if the main reason of not coping is chronic illness related. Things like applying for jobs give me so much anxiety that I can get interviews and then not go, not accept. Because what if I get the job and can’t manage or even worse what if I just sound like a fool and people question why I even bothered trying.

Having an undiagnosed illness and anxiety is having a history of not being believed, being called an attention seeker and so the second two friends say “Maybe she’s lying.” You worry there talking about you. Especially when it has seemed very off between the group of you over the last few months. With you being the outcast.

You feel like you have to act sick even more now. Or be really ill all the time to be justified. You fear your not sick enough and your just being weak and pathetic. Life turns into this ridiculous little merry go round.

You’ve had your trust broken so much, by so many that you’ve developed methods of isolation and telling yourself they don’t like you just to protect yourself from being hurt when they eventually snap and tell you everything they hate about you. Everything that’s wrong with you as a person. And that makes you feel more alone in this battle.

You have no one to open up to about your physical battles and internalising it all. Only having your irrational voice and you as your own cheerleader means the physical battles take all the more of a mental toll.

You question whether it’s just you. Or maybe daily pain is normal. You constantly fear judgement from other because your not good enough, not doing enough, not trying enough. And you feel like a poor excuse of a human. Your physically ill, but your not that physically ill and maybe your just making excuses.

Your left in a place of feeling completely and utterly alone. With no way to express how physically hurt you feel. Because physical pain has become the norm.

To people who have never experienced the hardship of mental/chronic illnesses…

Please be kind, we are incredibly fragile people. We break easily. Both literally and metaphorically speaking. We need treating with care. Please remember this before you say anything judgemental.

Please don’t say any of the below list:

  • Why don’t you just try? – We are trying. So much more than you can see. Unfortunately, us spoonies have to try so hard just to appear as a normal functioning human being, so on some occasions our work may appear to be lacking.
  • But quitting’s a bit stupid/There’s no point in just giving up – No it’s not and yes there is a point. We need to prioritise our health in whatever way possible. This  may mean quitting a job  because it’s harming our mental health so much. Or taking a year out of college because we’re too physically ill to cope with the demands.
  • It’s not that hard really – Maybe not to you but for us it is. Remember we are different people, have different experiences and handle things differently. Yes you may find it easy to lead a group or socialise but for others of us leading a large group puts us on the brink of a mental breakdown and you’re not helping this with the constant criticism
  • Maybe it’s not the job it’s you – Thanks, just more reassurance that I’m a useless piece of crap that deserves no place in this world. Thanks.
  • Any judgement on why we don’t work etc. – Again, not helpful. Maybe put yourself in my shoes for once. Try spending 9 years of your life terrified your dying of a serious illness with no one to confide in, only to find what you likely have is lifelong, life damaging and can only be diagnosed through surgery. Having depression and anxiety with minimal support. Try self recovering from anorexia. Then see how much time you can allocate to a job on top of your study demands.
  • Just get on with it – Really? I am in severe pain, have a whole host of other symptoms and a lot of mental crap going on in my head on a regular basis and you’re telling me to just get on with it? I’m doing the best I can, and that’s all that should ever matter.
  • Why don’t you… “Go vegan” “Try Yoga” “take x,y,z” “get out more.” etc. I’m sure we’ve all heard all of this before. However kind of a place in you’re heart that these suggestions come from they really don’t help. Trust me a lot of us have tried it all so we don’t need your stereotypical suggestions. Unfortunately for a lot of us these suggestions will never fix us and only ever provide minimal relief.
  • Are you okay? – I guess it depends on how you say it and who you are with this one  because sometimes it can be a blessing, but with some people this just really bugs me. Like of course I’m not okay but I’m not going to open up to you when I either barley know you or you speak in that condescending way. On top of that it’s been so long now that I have a standardised yes response to most people, even when I’m in severe pain and it feels like the whole world is crashing down.
  • You’re a burden – Or anything that could have that effect. A burden is the last thing that we want to be. Don’t tell us this, please. It hurts so much.
  • You’re just doing it for attention – No we are not. This is real. Telling us we’re doing this for attention isn’t at all helpful it makes us doubt ourselves even more than we probably already do.
  • You need a hobby – You know what I agree, a proper hobby would be nice. A sport maybe. But the reality is for some of us, working full time or studying full time can take so much away from us that things we once enjoyed are slowly taken away and slowly become less and less frequent things to enjoy. There’s a long list of things I did but have ended up now not doing regularly because it either hurt too much or was too exhausting to carry out after the days commitments have been completed.

I’m sure there are a million more things that people shouldn’t say but will keep it to this for now. Just please even if you can’t empathise at all try and be a little more understanding of peoples individual circumstances. You never know the full story so try not to pass such judgement on their character or work ethic.

“You Look Well”

Hello again readers of my blog. Today I’m writing about the “You look well” or “You look healthy” or any other variation of the two comment that people quite often make.

The comment that many people with eating disorders find triggering, they find to be one their head twists to mean “Your fat” “You’ve gained weight.” or “Your getting a litttle chubby.”

But that is by no means true and not what is meant when loved ones comment these things. The “You look well” comment is meant as a compliment not as anything else your eating disorder may convince you so I urge everyone to see it as a compliment.

I myself got variations of the “You look well” comment on two occasions yesterday and I could have let it really trigger me, especially seeing as that morning I had stepped on the scales to see a ridiculous weight gain in the space of a week. But there’s no need to let it trigger you or set it back in any way. Fight against that voice in your head and think about it rationally and logically.

Looking well is a good thing. It’s a compliment.

Lets put this into context with my case from yesterday. I got the comment from my dad and my aunt. The last time my dad saw me was nearly 2 months ago now. I was borderline underweight in terms of BMI, so underweight in terms of where my body likes to sit. I was majorly stressed about possibly having ovarian cancer, had no appetite and wasn’t feeling all that great. The last time I saw my aunt was nearly 3 months ago now, I was feeling ill with probably endo pain and again slightly stressing over possibly having ovarian cancer and under my body’s natural set point range.

It is a damn good thing that they think I look well! It shows I am healthy, well to some extent healthier than I was back then. And asides from the physical aspect of it, because there is a very minimal physical change in my health in terms of symptoms. We should want to look healthy. And healthy doesn’t necessarily mean skinny. For most of us healthy does mean having a bit of extra body fat and not being at the minimum possible healthy weight for our height.

I feel as though especially as a vegan. I would rather look healthy than not, just to help in some small way to promote the lifestyle rather than turn people away from it.

So fight those eating disorder voices. Because looking well or looking healthy are all good things and in no way means you need to start restricting again!

Should Goverment, Doctors and Media have have right to tell us what to eat and what not to eat?

Do you know someone who has an eating disorder? Have you seen how damaging they are? Is it possible today’s society has lead to a rise in cases of eating disorders and disorderd eating?

We are surrounded by media. Social networking, newspapers, magazines, Tv, Radio. The goverment is never shy to spread opinions on what we should and should not be eating 5-a-day. Or is it 7? Then there’s that change4life initiative, which is a goverment initiative, using the media to get it’s point across. The Media itself has told many food horror stories The debate between fat and sugar, how excess carbohydrates will make us fat. Contradicting comments on almost everything, it’s all just a little overwhelming! The rise of “Thisperation”. Pro-ana/Pro-mia sites. Vunerable pre-teens and teens have easy access to these sites, day upon day upon day. As a suffer of an eating disorder myself and haqving previously visited these sites I can say that to a pre-disposed mind, there is something about thinspo pictures which are quite enchanting, beautiful. It is also a place people can find friends, for someone with no friends you can see this could cause real problems.

Some say diets don’t work. Some suggest 5:2 or weight watchers. All involve some sort of restriction which can go in either one of to ways and has probably infact lead to an increase in obesity. You say a food is “Bad” you’ll want more of it. You restrict yourself then you want more. Your body craves more. You eat more. The other way restriction can go is leading to an eating disorder, suggesting you have a genetic pre-disposition and you would be surprised by how fast they can take hold.

A huge proportion of people in today’s western world has some form of disordered eating, spurred on by media and goverment. The “fat phobia” many people face. This also discourages people with eating disorders from getting help. They think what they’re doing is normal. The super-skinny celebrities, obsessing over sclothing size and stick thin models. People belive being skinny is right, being skinny is good. There is a commmon association that by being skinny you will be sucsessful. Now you can see how that leads to eating disorders. Right?

Eating disorders are of course an extreme but clearly something has changed to cause the rise. Children as young as 5 even are developing eating disorders. With the increase in media, it would be logical to suggest that is partially a reason for the rise, we are contantly bombarded with health advice, diet tips. Things that not so long ago we were not. It would be logical for the media to be a partial cause. Seeing the effects the media can have, why should they give us diet advice, health tips and all the rest of it? It’s harmful to all, more to some than others.

Going back to the goverment, school curriculums. Teaching children about food and nutrition from a young age. Lat year my brother came home from school one day, decided he couldn’t eat a cake because they are “bad for us.” He was six then! Isn’t is sad that a child who is slim, healthy and eats a balanced diet feels they can’t have a cake because of a lesson at school. We’re constantly reciving lessons of health and nutrition. Actually part of the AQA B1 spec is learning about BMI. Does this not flag up an issue for you? Take a 14/15 year old girl, wants to lose weight and realises according to that BMI chart her BMI is slightly over what is classed as healthy. Mix that with a perfectionistic personality, maybe recently divorced parents or bullying and you have created the perfect confitions for an eating disorder.

I do however realise the opposing veiw and understand it. To me healthy eating is just common sense and I belive all of us have the ability to eat intuitivly, others may struggle. Going back to the goverment, parents may eat unhealthy diets and it is important for the schools to teach children about healthy eating in this case, so they can make good desisions as adults and lead healthy lives. Then there is the issue of doctors If a patient has a weight problem. Either over or underweight then the doctor should work with them on a personal basis to help improve things. The same goes for when a patient is suffering from a condition which could be cured by a change in diet. Doctors should work with the patient on a personal basis, maybe refer them on to a dietistion or a nutritionist. Then there is the issue of the Media. “Supersize vs superskinny” and other such shows can be seen as light entertainment. That is what they are right? They shouldn’t trigger or lead to an eating disorder and people should be responsable enough to make the decision to watch it or not. No ones forced to watch these shows, they shouldn’t be banned just because they have triggered or lead to a few eating disorders. That’s not fair on everyone else.

In conclusion I do not think the media or the goverment should tell us what and what not to eat, and if they do it should be regulated, less contradictary and have more research into whatever is being said. I belive thos because of the effects today’s society can have on innocent indaviduals; doctors however should be allowed to tell us what we should and shouldn’t eat if properly trained in that area. This should only be on a one to one basis if in best intrest of the patient.