10 things to say & not to say to someone with a hidden illness/alopecia

Over the past ten months I have encountered many helpful and unhelpful comments from people.  On the whole, I am fully aware that they either don’t know what to say, they want to help but don’t know how but have my best intentions at heart. However, it never fails to shock me at how many people lack empathy or the ability to engage their mind before they open their mouth!

So, here are my handy hints and tips for what to say and not to say to someone with a hidden illness:

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Things NOT to say.

  1. I wish I had time to sleep as much as you do.

No you don’t. This isn’t a cheeky little Sunday lay in that we all crave after a long week at work or a fun night out clubbing. This isn’t a choice, it’s a necessity in order to cope with even a low amount of exertion. Believe me, I miss the days I was worn out from work or fun – you don’t want to experience this level of fatigue so don’t wish it on yourself!

2. I wish I could have ten months off work to just chill out and do nothing.

Really? Remember, if you’re not working you’re not earning. You lose your independence because you need to rely on others to help you out financially and that worry of not having any money or owing money is simply horrendous. Also, if you don’t work, you lose your purpose in life, you don’t have any responsibility and that sucks – big time.

3. It must be nice to not have any commitments.

It’s only human to look forward to a few days of no commitments and have some ‘you’ time but when that lingers for month after month, it really isn’t fun. To have to cancel plans and let people down is soul-destroying and isolating.  Don’t take for granted being able to plan things, see people and live life to the full.

   4. You don’t look like you’re sick.

If I didn’t have Alopecia, on the whole, I would look ‘fine.’ That is even more reason to listen to what someone tells you because it will deepen your understanding or take note of what isn’t being said because sometimes that will speak volumes. If I am quiet, I’m not in a mood – well, most of the time! – I am probably just quietly trying to manage my pain and resist the urge to scratch my face and head! The majority of my illness is hidden and I have become quite a good actress…just take time to understand that looks can be deceiving.

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 5. Try and push yourself through it, help yourself.

I am helping myself every single day. I pace myself, cancel plans, wear ear plugs all to help myself. It may not fit into your life or day but that’s why you have to be empathetic and understand, even though I know it must be frustrating at times.

6. I have a friend who tried **** and it cured them, you should try it too….

Believe me when I say I have and continue to try anything and everything but ten months in, I really don’t need to hear that your uncle’s best friends daughter rubbed vaseline into her joints for three weeks and he was magically cured! Everyone is different and although these weird and whacky treatments are fab, I don’t really want to hear it. I’m honestly not being ungrateful here, sometimes people have spent a long time researching their suggestions for me and these ones I always follow-up and look into, it’s just the odd ones that get me.

7. Just be patient, you will get there in the end.

I know. You don’t need to tell me.

8. You should say yes more and get out, it will help.

How I would love to do this. When I can, I will but when I can’t I don’t. It’s not because I don’t want to, it’s because I know I don’t have the spoons.

9. You’re too young to be this ill.

Age doesn’t factor into illness. As many people will know, if you’re ill, you’re ill. There’s no rhyme or reason to it, it just happens, so don’t comment on age.

10. You look so much better than I expected you to look.

Thanks…..I think. Does this mean I actually look awful but less awful than you’d imagined?! I know it’s a nice thing in reality but, you know what, I really don’t feel great and remember, it’s all hidden so just because I don’t look as pale and horrendous, this doesn’t match what I’m still dealing with.

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Things you SHOULD say:

Simple really, I believe you. I’m here for you.

Basically, It’s just nice to know your friends and family trust and believe what you are saying to them even though that can’t physically see it. It’s nice to know they’ve looked into your illness so have a deeper understanding of what you’re coping with without having to bombard me with questions. It’s nice to be involved in conversations that don’t revolve around illness, I like to hear gossip, news, problems and laugh – anything to take my mind of things is always lovely.

Thankfully, this is a quality that all the people in my life hold. If anything, being this ill has made me see who my true friends are and I can tell you now, I am one lucky girl.

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Things NOT to say to someone with alopecia:

  1. Being bald really suits you!

This is something you say to a friend when they’ve been to the hairdresser and had a change in style or colour. I haven’t been to the hairdresser and asked for a buzz cut. It’s not a choice.I don’t want to be bald, I don’t want it to suit me.

2. Thank goodness you’ve got a lovely shaped head.

Yes, it is a bonus that I have a nice shaped head but what could I do if I didn’t?! Would it make me repulsive? Like suggested by a newspaper recently – would it put people off their breakfast? No. Under your hair, you all have a bald head it’s just that you can see mine and I really don’t want any more attention drawn to it than necessary.

3. It must be so much fun to be able to experiment with wigs and scarves.

This is so well-meaning by anyone who says it, it’s a positive view on what they know is a tough situation. But for me, at the moment, no. It’s partly down to the pins and needles I have constantly, I can’t bear anything being on my head at the moment. Maybe, hopefully one day, I will feel happier wearing wigs but for me it just reminded me of what I’d lost. Worrying about it slipping, blowing away and having to remove it at the end of the day continued the trauma for me. If I’m just bald day in, day out, I don’t have to remove anything, I don’t have a reminder of what I don’t have anymore. I admire the wonderful women I follow on Instagram and on the Alopecia UK site because they seem to have fun trying and styling different wigs and I hope that one day that can be me. We shall see. As for scarves, if you know me at all, you’ll know how awful I was at styling my own hair let alone tying knots and twisting material and making it stay! Maybe practice makes perfect but again, not for me right now.

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4. Being bald must make getting ready so much quicker – you’re lucky!

Funnily enough I miss washing, drying, straightening, playing with my hair. Yes, I can get ready much quicker without all these processes but it’s not my choice and if you took time to think about how it would make you feel, maybe you wouldn’t say it.

5. You must save so much money not having any hair.

Yes, I do but I miss going to have my hair done, trying new products out…I’d trade you any day!

6. I’m having such a bad hair day!

This one always makes me chuckle. I actually don’t mind people talking to me about this because it’s a normal conversation for girls to have. I guess I don’t have bad hair days anymore, I just have no hair days! Some days I cope with my Alopecia better than others and can laugh and joke about it but most days I can’t stand it.  However, that doesn’t mean I don’t like to hear the moans and groans about bad cuts and colours or how the wind and rain is annoying – unless I’m having a bad day (which isn’t your fault) I love these moments.

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7. It WILL grow back.

Unfortunately, as lovely and hopeful as this comment is, we just don’t know. Many people’s hair does return but many peoples doesn’t. There is no cure and there is no plotted journey for hair loss. So although it’s a positive comment, in a way, it gives false hope so maybe just don’t say it.

8. It’s only hair.

As with so many of the above, just spend a moment thinking about how you would feel if one day you had beautiful hair and a few weeks later it was all gone. It’s not just hair. It’s part of you, it forms part of your personality. It changes how you feel about yourself and affects your confidence more than you can imagine.

What you SHOULD say and do:

Laugh at hair loss jokes and give cuddles when it’s too tough to find the strength to be positive about it all. Be honest when a wig or scarf looks utterly ridiculous but also comment on how lovely and beautiful we look when we get it right!

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And remember, September is Alopecia Awareness month so get your Fun Hat Fridays sorted and get in touch if you want me to come and do a class talk etc. Thank you so much for all your continued support, I really am lucky to have the support system I have.

Fun Hat Fridays

#hairlesshannah

x

 

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2 thoughts on “10 things to say & not to say to someone with a hidden illness/alopecia

  1. Cath Green says:

    Zzinformative and instructive, we’re all guilty of getting it wrong but it is good to be told. I know it’s not always easy to talk about it all so your blog is as useful to me as it is to anyone else! X x

    Like

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