Condition and hair loss :(

Rose113 · September 4

So basically I just got a diagnosis a few days ago for a condition that I have and one of the symptoms is hair loss which falls out a lot like I can brush my fingers through my hair and it’ll just fall out into my hands which isn’t like massive batches of it but it’s still kinda a lot.

I know this is probably kinda dramatic but it’s terrifying for me

Sorry

toffuna101 · September 4

that sucks. you dont have to apologise since your vent is valid. i wouldnt want hair to fall out of me so youre not being dramatic

Azziman · September 4

Hey @Rose113, thank you for sharing how you're feeling about this with us. Getting a diagnosis can feel scary, so it's natural and valid to feel the emotions you're experiencing at the moment. I can hear that you're feeling quite worried about hair loss - that makes sense, especially as it's a more "visible" symptom compared to others. You're welcome to use this space to express your emotions about this. Is there someone (e.g. family/friend/counsellor) that you feel comfortable speaking to about your experience? It might be helpful to have someone you can talk to about this for support. And of course, we're here with you through this

Rose113 · September 4

@Azziman im going to the hospital tommorow to speak to the specialist :')

Rose113 · September 5

Really scared for the hospital trip 🥲

Gemma · September 8

Hey @Rose113, I just wanted to check in to see how the hospital visit went with the specialist? It's totally understandable you would be feeling anxious and scared about these symptoms. You're doing really well to keep reaching out for support.

Rose113 · September 8

@Gemma it went okay, I was put on medication to help with the pain and had more tests but then found out I wouldn’t be able to have any kids in the future

Gemma · September 8

I'm glad they were able to give you some meds to help with the pain @Rose113.

Oh goodness me, I’m so sorry to hear about the news you received from the doctor. Did the doctor give any advice around whether this is more of an increased risk or whether they feel it is highly unlikely to happen? I can only imagine how incredibly difficult it must be to hear something like that at your age. It’s such a heavy and personal thing to process, and it’s completely understandable if you’re feeling a mix of emotions. Were kids something you saw in your future?

If they were, I can understand how your future has been thrown into uncertainty, and that can be scary. This kind of news can reshape how you see your future, and that can be incredibly hard to deal with. But please remember that your worth isn't defined by one aspect of it. You are so much more than this diagnosis. It’s okay to take your time processing this.

Rose113 · September 8

@Gemma they said it’s a very low chance and if it did happen it would be a very complicated journey

yeah I wanted kids when I was older which I know adoption is possible but also it wouldn’t be the same, having kids of my own would of been the closest to being with my own blood if that makes sense.

Gemma · September 8

I'm really sorry to hear that @Rose113. I completely understand what you're saying about wanting to have kids of your own. There's something deeply personal about that connection, particularly knowing your background and what you've been through. I imagine it's hard to come to terms with the idea of it being a complicated journey. Adoption is a lovely option, but I get how it feels different. It’s okay to feel all of this. It's important to know that there are options available to you when it comes to the time of wanting to have kids and there is support available out there for you.

You might like to look at exploring some of these emotions through counselling if you feel that would be helpful for you - The Mix offer 1-1 counselling and there is an organisation called Youth Access which has a database of free youth advice and counselling throughout England and Wales. You can visit their website to look for local options.

I know you've been experiencing some pain with the diagnosis of your condition and you deserve to be supported through this. Pain Concern offers confidential, anonymous and free telephone and email. They don’t give medical advice but can provide a safe space to talk about pain, as well as emotional support and information on pain and self-management techniques You can call them on 0300 123 0789 Monday 2-4pm and Wednesday 6-8pm or you can email help@painconcern.org.uk. For more information you can check out their website https://painconcern.org.uk/

Sending you lots of hugs and strength

Rose113 · September 8

Thank you @Gemma

Condition and hair loss :(

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