Move to a new country

[Whispermae]

Hi, I haven't come here in a while but I thought I would like to write in again because your past responses have been so understanding and validating.

I have relocated to the UK. I really like it here, but I've been ill almost nonstop since arriving. I've started having "non epileptic seizures". I become paralysed, vacant, and unable to respond, sometimes convulsing and hitting my head. My doctor has said it's related to the abuse I experienced when I was little coupled with the major change of moving across the world. That makes sense logically and if it was a friend I would feel so awful for them. But I hate myself for reacting this way.

I can in no way control my seizures although I do my level best to fight then off (which fails every time.) But I feel like I'm "stealing" from people who have "real" seizures. This was not helped by an idiotic article I read where a doctor says that people with non epileptic seizures won't have any when they're alone because they do it for attention.
I have had several on my own. I have been totally alone, helpless and unable to call for help. I thought I was in hell.

I feel like I am caught between two worlds and I could just go up in smoke. With every seizure I feel closer to disappearing. Between the seizures and the recent operation I've had, along with the pain and dramatically fluctuating weight, I don't feel like I even have a body anymore.
With all of this, I am trying to see myself as an ordinary woman because I am very ordinary in most ways. I go to university, I love to meet friends and I want to have sex one day.

I have started masturbating again - what's more ordinary than that, right? - and find that, while it's now easier to have an orgasm, my feelings change from turned on and comfortable to upset and angry (with myself) as soon as it starts. Feeling so angry at my body can't be healthy, can it? But when it gets randomly paralysed halfway up the university steps or starts convulsing in the bathroom what else can I feel?

I am afraid no one will want to marry me.
Yes, I know how stupid that sounds. And I know marriage doesn't define my worth. But I want that for myself. I want to have children and I want to make a home.
But thar doesn't seem possible. And that makes me really, really sad.

[Sam W]

Hi Whispermae,

It's nice to see you again!

What's happening with the seizures sounds incredibly stressful, and I'm glad you've been able to contact a healthcare provider about them so you can get at least some medical support. It sounds like they've provided a likely cause for why this is happening now. Have they also been able to provide you with any tools for managing the seizures, including ways to plan for your safety if they happen when you're alone?

It seems like you already know that the article you read was nonsense; sadly, there are still healthcare providers out there who are a bit too quick to dismiss patient experiences, or who try to downplay what are very painful or alarming instances because they're not as severe as they could be.

I do want to say that, as much as I'm someone who believes that loving your body is a positive thing, I'm also someone who is 100% aware that sometimes having a body really, really sucks. Especially for folks dealing with chronic health or pain issues, bodies genuinely are a source of pain, frustration, and other negative emotions. I don't think hating our bodies as a default is healthy, but having times where you wish your body would let you get out of bed, climb the stairs, go to sleep, etc and you're upset with it for not doing those things isn't what I'd call UNhealthy. To me, those moments are just part of being a human with a body.

It sounds like some of what's happening for you is that this is making you feel very disconnected from your body and from your hopes or aspirations for the future. Have you done much reading of work by people who live with things like chronic pain or seizures where they talk about navigating their relationships with their bodies or sex (either solo or with others)? If not, we could find you some places to start, since if nothing else those experiences may help you feel less alone.

[Whispermae]

Hi Sam,
Thank you for your reply. You're right that it's natural to feel unhappy about this, I see that. But the way I talk to myself is absolutely vicious. I want to change that but I genuinely don't know how. I feel like if I'm nice to myself I'll never be able to get on with it.
My doctor referred me to a specialist but I'm going to be waiting months. Until then everyone keeps sending me in circles and it's incredibly frustrating when I am experiencing multiple episodes per day.
Yes, I would like to feel less alone. That's the worst part about this is feeling alone. Especially because the weakness and pain isn't 24/7. I can sometimes run and lift a 20 kg suitcase and other times I can't even get out of my chair without support. It's so confusing and being disbelieved really hurts.

[Latha]

Hi there, Whispermae

Your situation seems so frustrating! I'm sorry the wait time for seeing a specialist is that long- it is ridiculous that you'll have to wait months to get help with something that is hurting you now. Unfortunately, this problem is all too common. I know that plenty of people with disabilities and chronic illnesses know what it is like to wait a long time for support, be led in circles, and be disbelieved and invalidated. Honestly, if you're looking to feel less alone, it might be a good idea to look into disability support organizations near you. There likely is one in your university.

You could also look into certain online spaces. If your seizures are influenced by the abuse you experienced, perhaps you have Psychogenic Non-Epileptic Seizures. Reddit has a community for that: r/PNESsupport. You could also look into r/FND (a broader category of illness that PNES falls under), r/Disability, and r/Epilepsy. You may not have epilepsy, but you do have similar symptoms, so their tips could help you.

If you haven't done so already, it might also be a good idea to communicate with your university about getting accommodations.

I feel like if I'm nice to myself I'll never be able to get on with it.

Would you expand on this a bit? Do you think that you have to be unkind to yourself to get better?

Here is an article that might help you: Body Talk: Listening To and Learning From Your Chronic Pain

[Whispermae]

Hi Latha,

I feel like since I'm yet to be officially diagnosed I have no right to call myself "chronically ill" especially because my most prevalent symptom is weakness/paralysis rather than pain. That stops me seeking support. Also, I am ashamed of the seizures. And I am ashamed that I'm ashamed of them!

I don't think I need to be unkind to myself to get better. I think I need to be unkind to myself just to survive.

I read the article you suggested and tried the exercise of checking in with my body. It turns out that I'm in a lot of pain that I hadn't even noticed until I really paid attention. That made me wonder if my body has just gotten used to pain, so it doesn't even give the signals anymore. Which is a bit sad.

I am worried about what this means for my future relationships. I had a sort-of, very short-lived relationship once. He asked me how I was and I replied that I was tired. He got annoyed and asked me if I was ever not tired. That hurt more than it probably should have.

Even in my closest friendships I have to censor every word I say so I don't make it seem like my every text is about illness or pain. Even when I'm having a period where it truly is. I feel so much pressure to be cheerful and positive. Even writing this I'm trying my best not to sound too unhappy.

[Andy]

Hi Whispermae,

I hope it’s okay that I’m jumping in here, I just want to let you know that a lot of what you shared here feels super relatable to me as I’ve been living with undiagnosed chronic pain and other health issues for several years while also studying university (and reading your posts helped me feel less alone in this so thank you!).
I hear you on trying to feel “ordinary”, I hear you on feeling pressure to be positive all the time, I hear you on being so used to the pain that you don’t even notice it and most of all, I hear you on feeling like your problems aren’t valid. That can all be really hard and I’m so sorry you are experiencing that. And I’m also sorry that your ex-partner, friends and medical proffesionals (all essentially people who should be the most supportive ones) have been unsupportive and I understand how that can make reaching for support difficult.

What you said about not feeling like your struggles are valid because sometimes you can run or lift a suitcase really hits close as I feel like that a lot of the time. What helps me is reminding myself that nothing, including health issues, is black and white, there are many people around the world with many different sets of abilities and disabilities and their differences don’t invalidate each other. To break this down a little you can imagine an activity like walking – there are people who can do that with no effort, there are people who might need a cane or a wheelchair to get around and there are also those who need that one time and don’t another and that doesn’t mean they don’t deserve their aids at times when they need them. Just like feeling better at a given moment doesn’t mean your seizures aren’t that bad at other times.
I really like this article: Surviving Success: Achievement After Sexual Violence Does Not Invalidate Our Struggle it’s about healing from sexual violence, but its message (that is contained in the title) is applicable to other topics including chronic illness as well.
Bodies are complex and complicated and don’t always work in ways that we expect them to and even less in ways that the society and other people around us expect and want, but there are people out there who get that and who will understand your struggles and needs and I’m hoping you’ll meet a lot of them, be it friends, partners or medical providers, soon.

I went a bit on a tangent there so please let me know if that makes sense and if it’s helpful. And you can also let us know how can we best support you in this, if there’s some part of this you would like to discuss more, if just a place to vent is what you need the most, if you would like to hear more about how life with chronic pain is for me or anything else.

[Whispermae]

Hi Andy,

Thank you. It really means so much to hear from someone else who is walking a similar path.
I would like to hear more about your experiences, whatever you are comfortable saying.

I don't know how to go about telling friends - all of whom have their own issues - just how bad things have gotten. More than the illness, what affects me are people's reactions.

I really wish things were different.

[Andy]

Hi again, Whispermae!

I wish it was different for you too, but I promise you it can be and will be different. Medication or other treatment can help with lessening symptoms of chronic illnesses or can even clear them up completely, and even when that kind of medical care isn’t accessible or isn’t helping, other things like having supportive people around you, getting to know your body better or getting accommodations at school or at work can go a very long way in helping us feel better in our day-to-day life.

As for me, for a little context, what I struggle with is mostly pain, fatigue and digestive problems, all of which are practically constant but change a lot in intensity which that means a) that most of the time I look perfectly fine to those who don’t me really well so a lot of people don’t even know something is going on and b) there are times when I have no trouble doing anything I want (I study at a university, have a lot of hobbies and was even able to do sports regularly up until about a month ago) and then there are times when even basic things feel like too much. So yeah, even though my experience is quite different from yours those feelings of not feeling that your problems are “real” or that you have to be unkind to yourself to get by, that you expressed are really relatable. As for how to don’t let them make you think too negatively of yourself, there probably isn’t one single way. Someone finds being in supportive spaces (be it online or in person, organised or not) and hearing other people’s stories really helpful, for other people seeking professional mental health support is an important part of that, and what’s helping me is trying to learn to notice when these feelings crop up, acknowledge them, think about a possible cause (maybe I feel pressure to be too productive, maybe someone made a nasty comment, maybe I’m just tired etc.) and then gently remind myself that they might not be all that true.

As for talking about this with friends, have any of them expressed that they wouldn’t be supportive if you shared with them how you feel or asked them for help? A few weeks ago I wrote down the same exact sentence that people’s reactions is what’s often the worst part of this, but since then I’ve been thinking about it and asking myself if I have any solid “evidence” that their reactions would be negative. And with majority of people I realised that I don’t have that evidence and that automatically presuming they wouldn’t react in a good way is likely just a mechanism of trying to shield myself from the possible rejection/lack of understanding but is also preventing me from experiencing positive reactions. I also realised that often I feel the most comfortable and safe around people who don’t have trouble complaining or expressing their needs because apart from the fact that asking for support is often the best and only way to actually get it, it also signals other people around you something like “I’m only human, there are things I struggle with and need help around and that’s okay and normal” which helps other people feel that it’s okay and normal for them to ask for help as well, especially when they have their own issues like you said. How do you feel about that, does that make sense?

I also wanted to ask if your doctor gave you some other resources or advise other than the specialist you mentioned where you could seek some professional help, and if not if it’s something you would want to ask them for? Because having to wait months for any evaluation or treatment especially with a condition that’s relatively new for you, seems incredibly stressful and frustrating.