Hair loss and medical mistreatment update

[Starbabyy]

I've been going through hair loss for 6 years and seeing my current dermatologist for 3 years. this year I lost my eyebrows so my dermatologist finally decided to get me a scalp biopsy and I have alopecia areata.

For years they kept putting traction alopecia on my chart even after I thought we ruled that out after I told them I don't wear any hair styles or do anything that would cause traction alopecia.

For years they refused me a biopsy and told me I didn't need one and then when I lost my eyebrows they did one right away. Now I'm on steroids for it but I'm disappointed because my hair loss could have been prevented. I've lost nose hair, eyebrow hair, and some lashes at this point. I don't care about the hair I've lost all my scalp but losing my nose hair, eyebrow hair and some of my lashes has really impacted my health and sinus issues because I have allergies asthma and sinus issues all my life and now that I'm more exposed to allergens it's made it a lot worse. I've been getting allergy shots for 2 years want this spring it felt like all that progress felt like it went away when I lost my hair because I was more exposed to allergens, dust, pollution, etc..

Every time I wake up with lashes in my eyes I think about how it could have been prevented if they had just taken me seriously earlier instead of seeing the hair loss as my fault.

This is always the situation with my health issues, I'm always disregarded because of my age and because I'm black and because I'm whatever else and then when it finally gets so severe that they can't ignore it anymore, they finally begrudgingly treat me. But being multiply marginalized like I am, being a multiply disabled black person, it just feels like my health and at times my life is constantly in the hands of other people and they can just do whatever they want to me and I can't do anything about it. :/

[Hidden]

Hi Starbabyy, thank you for your kind update.

Ugh! This sounds so frustrating.

I had my own cousin of this problem. My cysts are not treated on the NHS (no medical need, though they did used to remove them). You now have to apply for specialist funding. But as a result of the cyst not being treated, instead of removing something the size of pea, it is now the size of a cricket ball, and a much more major procedure to remove.

And I end up thinking, why the heck did you not remove this when it was smaller and much easier to do ?

It sounds horribly like your medical practitioners were very confident in their diagnosis. It sounds like nothing you said up to that point had any effect on that diagnosis, and that it wasn't until your eyebrows became affected that they started questioning their own thinking. After all, if it was your hair style being the cause, that would not explain the loss of hair elsewhere.

I am also surprised as I would have thought, though I'd be interested to hear from anyone who knows more on this, that a biopsy would have been an important diagnostic tool for your Doctors, Unless that test would have caused you discomfort / inconvenience / pain for no anticipated benefit, then I don't see why it could not have been done, especially as you had been saying things that might run counter to their diagnosis. That suggests to me, again, that they must have had high degree of confidence in their diagnosis.

Is the alopecia areata now their diagnosis? And are you happy and comfortable with having that diagnosis made? It sounds like like you really have had a journey to get there.

I would sincerely hope that the reason they were disinclined to listen to you was NOT based on your age and ethnicity?! That is potentially malpractice, no question. Unless your condition could be one of those few which are endured only by those from certain ethnic backgrounds, then I don't see what your ethnicity has to do with this. As far as I'm aware, alopecia ain't one of 'em!

Age should only really affect things if you are under 18, where parental advice / consent may be needed. If over 18, then you are the patient. They need to listen to you. Its your body, you know better than anyone how it works. Doctors have amazing experience, but it is worth remembering that we cannot even cure the common cold! There are still limits on knowledge to many medical conditions. A lot of conditions have very similar symptoms too, which can make telling them apart harder.

COVID is a great example. For ages we've heard about the temperature, the cough, and yet some people have had COVID and no symptoms at all. All this makes diagnosis that much harder.

Just remember, you always have control over treatment you receive. They must, after all, obtain your consent to treat. Obviously, you don't want to withhold consent, you want this problem fixed. But you can use it to your advantage. If you are not happy with the proposed course of treatment, ask them to justify it and query it before you give your consent.

Easy for me to say, but whether this problem could be avoided ? May be that is a what-if too far. You may never know for sure whether you could have avoided it.

That has to be for you to decide whether to worry about it or not. I'm not sure I would, but that is just me.

Wishing you every bit of success for whatever treatment is going to make things better for you. Keep us updated, its great to hear from you.

CB

[AlwaysSmiling Community Ambassador]

Hi Starbabyy , I'm so sorry to hear you have been treated in this way by medical professionals whose job it is to take care of you. Things sound like they have been quite difficult for you these past few years with all you have been through but I can assure you that you're not alone and you're doing well.

I understand the frustration of not feeling listened to by doctors. At the end of the day, we know ourselves best and can tell when something isn't right so it is a shame that they don't always consider that.

I hope you start to feel better about all of this soon. And in the meantime I'm here if you need to talk.

[Lucky747]

I am s sorry you have been through this and can understand your feelings towards this. Just wanted to write something to acknowledge all that you have went through and I hope that things will now be treated as they should. I am here if you need to talk.