Feeling like a failure... normal?

[hgrl]

So FINALLY after 10 years of constant pain & fatigue I’ve been referred to see a specialist who is known as one of the best.

You’d think I’d be over the moon about it, deep down inside I know I am. BUTTT, I’m really struggling with the fact that I cannot hold down a job & it’s making me feel like a failure. Like I should be able to & getting frustrated & putting myself down about it. Especially as I’m having to sign myself on to benefits.

On the very same day I got that letter I was also asked to go for a job interview next week for a very good but demanding job. Most people would be happy, I just spent hours crying. It hit me that right now I’m really in the worst of it with everything going on with consultations & the likelihood of a lap + the fact I’ve always been let go easily from jobs due to having to take 3/4 days off a month I just cannot work & don’t expect anyone to hire me like this, at least not any time soon.

I keep wondering, will I ever be able to work somewhere in the near future & not be sacked like usual? Or it have a real effect on my mental health also? Will I have to try & create a business for myself & work for myself. Will it be my only option?

All these thoughts are driving me crazy!

Some family & friends haven’t exactly been supportive as they don’t understand which just makes it worse. Because they don’t feel the pain or have the symptoms they say ‘Everyone has to make an income’ ‘You have no choice you’re an adult’ I’ve even had some tell me to grow up & stop feeling sorry for myself!

I’m fed up of spending time stuck in my house when I’m having a flare up just crying because I feel like I should be doing more & I’m missing out on so much

[StefaniaJW]

Honey, if a guy hads internal bleeding and his organs stuck together and couldn't work, they would treat him like a victim and he's definitely not feel like a victim.

DO NOT let this illness accuse yourself of what you're able or not able to do. It's the illness's fault. Do not let anyone tell you otherwise.

Is the specialist you were referred to an experienced excision surgeon?

[hgrl in reply to StefaniaJW]

Thank you so much. Your reply really helped on a bad day 🙂 I was being referred to an experienced excision surgeon & had it in writing, but now they’ve decided that they want me to see a gynaecologist first for some reason! I’m going to keep fighting x

[StefaniaJW in reply to hgrl]

Read my blog post on what to do when they don't want to refer you to an excision endo specialist. Unfortunately with endo it's the patient that has to choose the best surgeon and FIGHT to get a referral, but trust me, you'll save time and money by going straight to a specialist!!

[pump321]

I just wanted to offer you some support as I feel your pain and how you must be feeling after 10 years of struggling along without a lot of help by the looks of it. I don't know anything about Endometriosis (I think that's what is causing your problems) and I really really hope you are able to get some help now you have been referred to see a specialist who is supposed to be one of best. You must have suffered so much over the years and it's really hard not to be getting the sort of help you should have been given. I have a different long term condition (blood in my urine) which I've had off and on since 2008 and not once single person can seem to help me. Specialists seem to have given up and I have also suffered, like you. I am now going to see a different consultant but don't hold out much hope. I just wanted to say there are lots of us who understand how you must be feeling and I just hope you get some answers with this new specialist and your life will improve, bless you! You have suffered enough in every way and deserve a proper life free of pain. I wish I had more knowledge to be able to help you with this. Perhaps somebody else will contact you with some information, I hope so. I am thinking of you and wanted you to know you are not alone, there are many of us who struggle to get the help we need and suffer a lot of pain. I wish you all the very best and sending you a comforting hug x

[hgrl in reply to pump321]

Thank you so much! ☺️ I’m sorry to hear you’re suffering too. Keep pushing through though! We’ve all got to fight or frustratingly you don’t get anywhere as I’ve come to find out. Just got to learn to be kinder to myself & stop pressuring myself to act & feel fine. Keep us updated on your progress! x

[pump321 in reply to hgrl]

Thank you so much for your kind words of support

[MsEffy]

Hi,

I wanted to say that I feel your pain, adjusting to the life changes endo has forced on me has been a difficult battle and had brought me to bouts of severe depression. I have experienced the same response from family and friends and my social circle has reduced dramatically because of last minute cancellations. It is a lot sometimes, most of the time.

I have had to adopt a very strong mind of matter policy because that’s the only way for me to cope, I had to take some serious time to think about my symptoms and work life around them as well as pushing myself when I can so that I still feel as though I am contributing somehow.

I was awarded PIP but admittedly it was due to the associated depression and anxiety. I don’t feel they truly understood the physical impact of endo but it shows that the whole impact of this disease is valid so we should always believe ourselves and how we feel both physically and emotionally - I just remembered being a blubbering mess at the tribunal just explaining the overall impact it has had on my life.

Unfortunately with work the only thing I can suggest it once you find a job, if you can manage as best you can until you are permanent you will have some protection from the Disability Act and join a union, GMB has been better for me than Unison. We have to be present in the way we can in the workplace, it may not be the traditional 9-5 but we can still be valid employees, they’ll realise one day.

Finding a hobby that you can do sitting during a flare up is good to pass the time and also seriously consider starting a business, working for yourself will give you the freedom to manage your symptoms on your own terms. It will also mean that you won’t be so reliant on employment and you could work part time.

It’s an uphill battle I won’t act as though any of it is easy, everyday I have to carefully manage how I feel so i don’t dip into depression again. It gets easier.

Sorry to go on, I hope something helps

[hgrl in reply to MsEffy]

Thank you so much. Your reply really was needed on a bad day 🙂 I’m sorry to hear you’re suffering with it too though. I’m not sure where you are based but from what I’ve found out frustratingly in the UK it’s not classed as a disability yet so the help is pretty much non existent which really isn’t helping my mental health! It was nice to hear you mention that as I wasn’t sure if it was just me that felt like it was having such an effect. My anxiety has been through the roof & I’ve had many melt downs. Since I’ve posted this though I have got my fight back & I’m going to do everything I can to ensure it doesn’t win x