(Explicitly Sick) How to Travel, Live Heart Body and Head, and Ask for What Your Spoonie Self Needs: Phoebe Howlett

Website/Blog, Twitter, & Instagram Handle

www.thechanceofchoice.com

Twitter @chanceofchoice

Instagram @chanceofchoice

Name *

Phoebe Howlett

Disorder Info

What is your disorder? *

Low blood pressure, POTS, EDS (previously ME)

At what age did your disorder become a daily issue? *

20

Who were you before your illness became debilitating? *

The sporty, outgoing, quick-witted, ambitious type.

What would you do if you were not dealing with your invisible illness? *

I am doing everything I want, just substantially more slowly! If I were able-bodied I would take on projects that are too big than I can handle, I would also be considering my health less, that would be a real luxury.

What would you like people to know about your daily life? *

That I work REALLY hard to be healthy enough to feel the same way they do after knocking back 5 drinks and only having 5-6 hours sleep.

What would make living and moving in the world easier for you? *

For people to not question the fact that not all symptoms can be seen. If I need to go and lay down in the disabled toilet floor, don't make eyes at me when I walk out. Alternatively, teleportation would be a lifesaver.

Do you have any life hacks? *

An electronic massager was a surprising addition to help me. CBT was groundbreaking for my thought process. I think the term 'life-hack' was coined by an able-bodied businessman to be honest, there is no life hack to being chronically ill, its a slower, harder, more draining life. The hack to a life of the chronically ill is how to maintain a positive reaction to our life's path when we can't choose it. That takes time and serious effort.

What kind of support do you get from family or friends? *

To be honest, I gave up on support years ago- I ask and get, its not a matter of consideration and thoughtfulness. But I get it, if I didn't have these illnesses I just wouldn't be able to understand them or what the needs are for any one day. I have learned to not expect to feel supported but know when to fight for my requests (in line with my illnesses) to be fulfilled. The only exception to this was my sister who at age 16 at the time blew me away. She was the only one who saw the emotional side to my illness, the isolation, the loneliness of my symptoms being ignored. She fought for me in that respect despite not understanding the illness.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

My GP suggested my illnesses were depression, they also suggested I was pregnant, the tropical medicine specialist in the leading private hospital on Harley Street said it was a mild post-viral thing. But my real problems weren't that people didn't believe me on the whole, it was that they didn't appreciate the severity or down-played because they couldn't see the symptoms. I still remember my dad laughing at my requests when I came home one Christmas- when you have to laugh off 'so have you stopped pretending your sick yet' to friends and colleagues, getting it at home was seriously hard.

How has your chronic illness affected your relationships? *

I have lost so many friends because of my illness, they mixed up the requests I made for my illnesses over who I was combined with my outspoken nature at how brutal it is to have friends ignoring my illness. But really do you want friends who do that? Not really. I think for an ex, my illness was the beginning of the end. It has also made me look for the characteristics of thoughtfulness and consideration in new friends and partners, which is never something I'd consider previously.

Is there anything you are afraid to tell people in your life? *

I'm genuinely scared of how much shorter my life is going to be because of my illnesses.

What is your best coping mechanism? *

CBT or humor. My illnesses have given dark humor as a coping mechanism a whole new meaning.

What are you the most concerned about and the most hopeful for in the future? *

Most concerned about? Short-term I am always concerned about my sleep, like not in a healthy way. Mid-term I'm always nervous that something will happen in my life that will cause my body to go back into the depths of my illnesses I was previously ill. Long-term I recognize that my illnesses are tiny compared to what I had and I should not be consumed by them, my glass is full enough to be concerned about something more than just me. If we spend time only focusing on how we are breaking, we can't also see that the world is breaking in equal measure, seeing turtles try to eat plastic bags, seeing first hand Gen Zs trying to kill themselves as a result of pressure they now face, seeing kids in Guatemala drinking out puddles instead of buying the 10p water in the shops. Despite making steps forward in areas of the world we are overall I believe regressing in our own messy web of development. I am a dot in this world and my concerns, despite my health, should not only be about myself. But with regards to my illness, I'd love someone to come up with a simulation machine that lets people see what it’s like to live with a chronic illness, emotions and all. Then maybe the world would take it more seriously, and more money would go into finding out the why's and then the how's.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

To bring up the feeling of 'needing to do life a certain way'. It is something that I suffered with and still to an extent suffer with. I know lots of people I present to relate to this, I think a large area of my health suffered trying to conform with what I thought I was meant to do. In life, you are forced to consider decisions head vs. heart. But until you have a chronic illness or disability you never need to factor in body. With being ill, the decision is then head vs heart vs body. And any decision that wasn't true to my body, made my body suffer more.

What makes you energized or enthusiastic? What drains you?

Energized: Yoga, Enthusiastic: Making plans for an adventure in a new country Drains me: A big group of extroverts.

Any favorite books or shows?

Books: Quiet, Susan Cain has been life-changing, everything is fucked, a book of hope by Mark Manson anything by Bill Bryson Favourite shows: 8 out of 10 cats, Mock the Week, Would I lie to you, Peep Show, Outnumbered. (basically any English comedy)

What is the hardest and/or best lesson your condition has taught you?

Best lessons: To never take for granted the moments when you are feeling refreshed, positive and pain-free. Provided you are not hurting people, you do not need to consider other people’s thoughts on your life decisions. you think you are being kind but really, doing what’s best for you is the kindest thing you could do for yourself and ultimately the people around you. Hardest lesson: On the whole, when it comes down to it, people don't actually care. But that’s okay, so long as you recognize it. It goes with the whole sentiment, don't hope for better, just be better. (as a person, wish it was that easy with my chronic health.)

What is the best purchase under $100 that helped your life

My electric massager.

Any questions you think we should add to this list?

What symptoms did I face that I no longer face, what was my healthiest and most ill.

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