Interview with an Invisible Illness Warrior

Brains & Bodies, , , , ,

Hey Guys,

I was asked to be a contributor in an educational film to present to medical professionals by Troy Holmes and Hannah Ware who were collaborating on a chronic illness educational film for the University of Cambridge. Unfortunately, my health got worse and I am attending the hospital multiple times a week at the moment.

I am not sure if I can still do this also due to starting my industrial placement.  However, I thought I would post the type of things I would of mentioned in the video and the amazing work I am sure these guys will still produce (with or without me).  This post will mainly inform you a bit more on how Ehlers Danlos syndrome affects me a brief insight into my Borderline Personality Disorder.

1.If you could just tell us a little bit about who you are and what’s important to you?

I am Morgan 25 years old and studying Business & Management at Oxford Brookes University. I have various mental and physical illnesses and learning difficulties that makes me see the world a bit different from a lot of people.

I have been diagnosed with Ehlers Danlos III which is a collagen defect and causes me on the surface to have soft velvety skin and be super hyper-mobile but fragile. There is a dark side to this illness as I suffer from continuous dislocations, low blood pressure, vitamin d insufficiency, photo-sensitivity, bruises, chronic fatigue and pain.

I have recently just recovered from a broken ankle. I also have too many mast cells and I am histamine intolerant which also means when I eat it attacks my bladder and I am currently undergoing bladder instillations for chronic bladder syndrome.  The latest is I am due to start H1 and H2 blockers under the wonderful care of Professor Kullar to try and get this under control due to multiple food allergies.

 

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My physical health has impacted my mental health and I have  borderline personality disorder and clinical depression. I have gone through manic stages in the past trying to kill myself. I find it very difficult to sustain long term friendships and relationships.  I tend to see myself as a professional patient – as I spend my life in and out of hospitals.

It is important for me to have good quality friendships over quantity and to keep engaging my brain to keep away from negative thoughts. My moods can still rapidly change even though now I am on quetiapine and sertraline. I find it hard to make new friends going to social events is important to me and so is my father who knows the extent of past substance abuse.  I also enjoy listening to music, blogging, making art and cuddling my pet rabbits to calm down.

2.If you were to describe yourself to someone what might be a key characteristic?

I am a perfectionist, which is great for attention to detail but not so good under time constraints.

3.Thinking about your life, what were the defining moments or things that stand out for you?

The first time I picked up clay was interesting because I found this new found love for three dimensional art. Other times include passing my second year of University on a 1st, finding an industrial placement in the area I want to work in and working abroad in Spain teaching English to a private family.

4.So thinking about your life day to day, what kind of fills your day, what’s a typical week for you?

 To be honest with a chronic illness there is no typical week!

Although… I tend to wake up in the morning fighting with myself to wake up with a tension headache looking for paracetamol, water and coca cola to give me a slight boost to get up. I feel my joints ache as I trail to the bus stop and smoke two cigarettes before I can go into work. My days feel very up and down in energy and before this job (the first one I have had in years) I use to have to sleep multiple times a day.  Having Ehlers Danlos syndrome feels like when you hold a heavy bag for too long, but in this case it’s your body.

I spend a lot of time with my head to one side, sitting in my coat indoors and taking hot baths and showers to numb pain.  I dread eating because I know it will trigger off my allergies and attack my bladder making me want to sleep. If the pain is bad, my mood can heighten and I can become more irritable and show outbursts of anger even on medication.  I have to visit different hospitals weekly to keep me away from the operating table.

I am paranoid that people are going to mug me, laugh about me, hurt me or abandon me. I don’t have many friends at all in Oxford so I tend to avoid being there at the weekends, but don’t have the best relationship with the rest of my family either.

5.What’s it like to feel like you don’t have a standard day?

 

When a super flare hits I can’t do anything, wash, eat, sometimes even sleep. It is catch 22 I never woke up early enough to call the doctor at 8.30am and if I did then I didn’t have the energy to get to the doctors and back or the money for taxis.  When I have left flares so bad on many occasions I have ended up hospitalised for a few days. Some days I can do much but I put make up on to feel better and well the days I can finally go out I am very thankful for – as these aren’t standard days either!

6.Do you worry about people asking you what you do? And where does the conversation go if you do talk about your illness?

I find it much harder to meet new guys and discuss what I do and my illness. My ex-boyfriend appeared understanding of my physical health but wasn’t aware of my mental health issues, which is one of the reasons that caused it to die out.  I think it is a bit of a turn off and it’s hard to see even friends or date regularly when you don’t feel amazing.

I find having invisible illnesses is hard, especially when you need to sit down and no one will offer a seat on public transport or you have to tackle 100 stairs because there is no lift and debating if you will break something in the process.  Although, since I have gone to University and now doing a placement year I don’t worry as much as I know I working towards bettering myself.

The conversation can go many ways about my illnesses, people being curious and wanting to know more, people misunderstanding what my illnesses are and the side effects, people not caring about my illnesses and not wanting to talk to me and people wanting me to help promote products through reviews etc. People see that I am going out some weekends, so I look better but they don’t realise how many days it takes me to recover from going out. I am thankful for my best friend Ellen who has been there for me when a lot of people haven’t.

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7.So you mentioned Borderline Personality Disorder and Ehlers Danlos syndrome the effect it’s had on your life, can you tell us a bit more about that and your experience with it? 

Borderline personality disorder is also known as emotionally unstable personality disorder, where a person can’t regulate emotions properly. It really is a whirlwind of emotions or in fact no emotions. You want to be close to someone but you get so scared they will leave you, in my case well they eventually do.

I see others peoples point of views and heartache but I can’t seem to empathise with them and I to an extent I have OCD. I am always checking I have my phone, sometimes self-harming areas of my body, fear failure, anxious to try new things, social anxiety, lost identity and sometimes can be the opposite and to cling. I feel sad about 75% of the time and I use to not leave my house unless I was drunk, up until a couple of months ago. I can’t expect other people to understand me because I don’t understand or love myself properly.

Life is quite hard not having a good relationship with my brothers or mother but I just have to try and focus on doing something to keep my moods stable.  I find people or memories are the biggest trigger to my manic stages but I couldn’t pinpoint on exact memory or person that gets me back into the black hole.

My experience with it is I understand people who are ill better I find my split personality hard to maintain bonds with people. When I am mentally feeling better, I then have to battle with my physical health and my joints to do an activity. I know if I go out for 1 day I will be recovering for 4 days at least after which makes me feel like I am watching my life go by. At 25 years old I am already struggling to walk as my knees are giving way and could be in a wheelchair in a few years. I also will have to start wearing permanent splints soon because my knees can’t support the weight of my ankles… So I want to see some countries when I have some money to have some nice memories to look back on.

8.How old were you when you found out?

I didn’t get officially diagnosed with BPD until was 25 but there was evidence of symptoms since 2011, when I was also diagnosed with clinical depression. I got diagnosed with Ehlers Danlos syndrome in when I was 23 years old by a private rheumatologist. My mast cell problem and chronic bladder disease was discovered when I was 24 years old.

9.What was your experience with medical professionals and what’s your interaction been like with GPs and nurses? 

Most the issues I have had with medical professionals lay with GPS.  I got told for many years the pain was mental pain from depression when I knew I was in extreme pain and why I saw a rheumatologist privately.

I found it irritating that when a specialist consultant decides not to practice on the NHS anymore you are not informed and have to start the referral program with another one again.  GPS tend to just try to solve the immediate symptoms and gave me a lot of anti-biotics which I did not need causing more damage.  I have found nurses in hospital for my physical conditions very good and in mental health most are good but you do get a few bad eggs. The worse situation I had was when I was asked by a nurse, if I was the result of incest due to having so many health problems.

I have had relatively good medical professionals at Stanmore Hospital, St Marys Hospital, Churchill Hospital, The National Hospital for Neurology for Neuroscience, Stoke Mandeville Hospital okay overall with a few incidents. The problem I have is every specialist who sees me thinks there are additional issues such as Pots, fibromyalgia, Chrones and Celiac disease which causes for more testing some I have done been able to do yet.  I feel I have been listened more since my EDS diagnosis but many GPS don’t know what this is.

10.What tends to happen in those situations?

If I see my GP I tend to have to explain what EDS is and why I need a different amount of general aesthetic in hospitals. Due to my BPD it can end in me walking out, getting angry when I am not listened to or given pain relief and feeling like I have wasted my time as travelling to hospitals cost a lot of money. At an initial appointment with a new specialist, I usually take someone with me who can diffuse the situation or keep me calm.

11.Do you think that EDS or BPD has impacted your life and who you are as a person?

These conditions have impacted both really. Being ill has showed me the people who really care about me and although I can’t be an artist due to the constant joint pain. I have realised I am good at studying other things like Business and Spanish. It is unlikely I could every waitress again.  In a nutshell having chronic illnesses tend to affect how I plan my life moving forward and being adaptable to change.

12. Where do you kind of feel that you fit in within disability discussions? How do you identify yourself? Do you engage with that?

I think in support groups I fit in with discussions as other people have illnesses. Although, even in the chronic illness community – some people view it as a competition, so I don’t engage in some discussions.  

University view me disabled but I still have to apply for mitigating circumstances like everyone else. It is just more likely mine will be approved as I have a lot of evidence from doctors.  I still did not do an uncap resit I didn’t do my best in because I wasn’t mentally feeling up to it at the time.

My employer does not view me as disabled but they make allowances for me to visit my doctors which I am to make up in lieu. My employer also understands I may take longer in completing some tasks on some days. I am very grateful for this and their understanding, otherwise I wouldn’t be able to do the placement stated by my doctors.

13.What kind of, terminology do you use to describe yourself? What about chronic illness?

  • Spoonie
  • Zebra (Shows that everything isn’t just black & white)
  • Chronic life
  • Invisible Illness Warrior

zeb

14.When you think about yourself and your identity, how big a factor it is kind of EDS and BPD in who you are or do you see it as being quite separate?

A big part of BPD is having a lost identity. I feel as I have got more ill I miss the old me and  old hobbies… and I have got uglier. However, a part of the condition is it being described as being a part of my baseline personality opposed to bipolar where the episodes are seen separately. I have to agree that my personality or what I know of it is this condition.

With my EDS I try to make out to other people it is quite separate and I am not my disability…as other conditions have worsened stemming from EDS like chronic bladder syndrome and mast cell problems I have very limited energy and it does mean my hobbies and social life naturally had to change.

15. How does it, based on what you just said, how do you have resilience and well-being in yourself? 

I know that sometimes I don’t look after myself properly. I eat things that are bad for me if I am very depressed or in a rush but this is still quite minimal.  Nevertheless, I drink a lot of caffeine and smoke a lot of cigarettes to be able to function in the day,. I tend to replace one substance with another, which I need to work on. I do think that I am resilient in the sense of  moving forward with my days now and getting up in the mornings.

16.Which support and what would help you work? What were those situations like for you? 

Searching for an industrial placement was extremely difficult because I am not very good at the online tests to get an interview. I am fortunate enough that my employer is giving me the support I need at present.

18. When you’re talking to other people when they have a stake in your life, like an employer, what do you feel their perceptions of you are in the what’s the understanding like?

I think my employer understanding that I am unwell is good and I try to explain some of the things wrong with me but some issues I have like mast cell issues are quite hard to understand for someone who has never heard of it! So I try to disclose the appointments I have and anything relevant like if I am to start new medication which may affect my work.   Although, to know what they really think you would probably have to ask them.

19. Do you think EDS or BPD has had an impact of any relationships with family members or friends outside of work? 

I think that BPD affects my relationships with family and friends outside of work more than anything else because controlling my mood swings and anger outburtsts are hard work when anything can trigger me.  Although, from time to time I make plans but can’t do them due to physical pain and  I lose out of money to buying tickets in advance.

20. As a young person, with social media and all of those things, where do you see yourself as a young person with this generation?

I am not really sure where I see myself in this generation. Although, I can see that digital is definitely the way forward to get readers for my blog and other things. It is just unfortunate that there are so many trolls on the internet that do not know the impact of the nasty things they say!

If you are still here, thank you for getting to know me &  for reading.

Lots of Love,

my name

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Published by Brains & Bodies

27 years old and a professional patient. I spend my life in and out of hospital, keeping the NHS in Business. Click on About to discover more.

89 Comments

  3. I too suffer from a chronic illness but I was diagnosed much later in life. I love how you are being honest with these illnesses and that it seems you are one tough lady. Wishing you all the best. Sending a virtual hug your way!

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  4. Thanks for sharing this part of yourself with us. Through your journey it sounds as though not very many people have been able to understand what you go through daily.

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    1. Hi Dennis, yes many people don’t understand near me but I am thankful for the virtual support from other sufferers. The hardest part is people don’t understand why I can do much more things some days compared to others

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  5. I am so glad you shared your journey with us all! Chronic illnesses can be so difficult to deal with but you are not alone.

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  7. I can’t imagine how hard it is to deal with this, but thank you for sharing your story. It’s important for others to hear about it and it’s humbling to be reminded that we never know what other people are going through.

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  9. Thank you for sharing your story – so sorry to hear what you’re going through… I was diagnosed with a chronic illness in my twenties too and I found it tough to deal with at first. Stay strong!

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  10. wow. I found this very interesting, It must be hard to be there and go through all of this, but I am happy for you that you get to talk about it like this, thank you for sharing it.

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  12. This was such an interesting read! I have never heard of this chronic illness before. She is so brave and resilient! -Tonya Tardiff

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  14. I won’t even pretend to have an idea of what you’re going through because your experiences are unlike anything I’ve ever felt. I just want to let you know you are so brave for sharing your struggles with us on a public platform. Your openness is not unnoticed.

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  15. You are a hero of your own life! I can only imagine what you feel and how difficult your life can be suffering from all these. But all the hard days and nights can only make you stronger in the end.

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  18. And here I am crying over lame things. You are really brave. This really put me together to appreciate the benefits I have. Keep strong girl

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  19. I’m sorry that you’re going through a lot of these. I know that there’s no words that could really make things easier to bear but know that you’re on my thoughts. May you find the courage to continue fighting.

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  24. Hey Morgan,

    I am glad you have been gone through chronic illness. It’s never been easy to recover and you are opening up about this disease that will be helpful for others who have been reading this blog.
    Thanks for sharing.

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    1. Hi Sheryl, it’s day by day ! The ankle is healed just the ligaments that aren’t ! I am in the hospital a lot to help manage things a bit better …. but everyday is a struggle at the moment . I hope you are okay 😘 xx

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  27. Love your openness on EDS III. It is what my hubby and 3 kids have. My son is about your age. Joey Hellyer. My youngest is Diana Nicole Copling. She had a lot of dislocation issues in school. We are all available if you need someone to chat with!

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  28. I am so proud of you dear. You have been through so much but you didn’t give up. It would have been so tough, I am glad you shared your story with us. More power to you love. ❤

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  29. First of all, let me tell you that you are so brave! I definitely know where you are coming from. I was 26 when I discovered I had an auto-immune disease. It was horrible, I had to see a cardiologist and a rheumatologist at the same time while battling with the disease causing a lot of physical pain, heartaches and depression. It took me a month to bounce back to life, started living right and back to basics. I took some pills. I decided, no matter what I would try to live a life that I wanted and always see the positive things out of everything. 14 years later… I am still here and travelling Southeast Asia. Thanks for sharing! Big power hugs to you.

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  31. Thank you so much Morgan for sharing your story. I know that it’s just a tiny part of your story but I can relate in so many ways. I think that many of us here with all types of EDS can. I also have H-EDS III & have felt awful all summer! I’ve been so angry because it just got wasted & now the kids are back in school. I have a new Urologist to see this week, a Hematologist next week, my ENT again this week & another CT scan & my Cardiologist in 2 weeks & Friday my Natropath for IV Therapy. IT IS EXHAUSTING! I’m just tired! Like you. I’ll go 3 days w/o a shower! I never would have done that 2 years ago! But I’ve gotten so much worse so fast…we just don’t know. We are sandglasses but we don’t know how fast or slowly the sand will flow. I try to keep positive for my family & me too but it’s tough when you’re exhausted. The last 4 days I’ve been up & out & busy & running errands & went to a play & a football 🏈 game but…NOW it is 1:25 am & everything hurts so much, my heads throbbing, I can barely see, my bladder is spasmodic & my ❤️ is sad. I know that I just had the best 4 days that I’ve had in months & months & now I will pay greatly for weeks.
    Today all of my sweet friends that I ❤️ so much & used to see all of the time in my 20’s & early 30’s were so happy to see me & hugging me & telling me “My Gosh You LOOK AMAZING!!! How are you feeling sweetheart? You been ok?”. I don’t say “yeah ok” anymore. I laugh usually & say “Thanks! Well, honestly that really depends day to day. It’s been a really tough summer & I just had my 2nd bone tumor removed last month but I’m here today & it’s sunny & my family is here & I’m so excited to see you & to be out of the house, my bed, a hospital!!! Plus this spray tan I put on last night helps a bit! And a girl is ALWAYS SO THANKFUL FOR HER MAKEUP!” They ❤️’d it. 😂 I just refuse to pretend it’s ok because my makeup & outfit “are cute” or I’m not wearing my knee, ankle & neck braces. Thanks so much for sharing. Just seeing this tonight as I lay here hurting but so happy that I finally had fun with my FAMILY & my OLD FRIENDS! It also breaks my 💔 because I have to accept that days like today are so so so rare. Stairs at a football stadium with thousands of people?!?! Not safe. I’m a happy girl. Tired. Hurting but happy. Thank you 😘

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    1. Oh that’s awful Amy! One summer abroad the heat helped but then it didn’t because I wasn’t absorbing the sunlight! I am not sure what a hematologist is – is that for a hernia? I know dry shampoo is our best fiends ? I feel I have got worse a lot faster to so I’m pushing myself to go out more while I still can ! I hope you enjoyed the football game . And I know exactly what you mean I use to need the toilet to much and then can’t go at all and then my bladder fills up for to long and incoming a potential infection. I have been slightly better since bladder instillations but not majorly ! That’s amazing everyone thinks you look good ! I hate having to go out looking a mess but it’s that or not at all! Sounds like you have been through the wars to! Hahaha I have to start wearing them soon to don’t worry ! I’m glad your happy even if you are hurting 💕💕

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      1. You are a stunning young woman & so much stronger than you know Morgan! Honestly beautiful! A hematologist is a specialized blood doctor. I also will finally get to see a Urologist after a 5 month wait & them moving my visit 4! times! What are the bladder instillations that you get? My primary Dr put me on Oxybutinin (Dextrol) for Interstitial Cystitis months ago. It’s got a lot of side effects. One is my vision has decreased rapidly since I started taking it! Can’t read my phone or see my fingers well etc without glasses. Which get higher in strength each few weeks! Scary! I’m so sorry that you are so young & suffering physically but mostly so much psychologically. That’s the WORST PART! It’s different for us all! If I could give you any advice at all, it would be this:
        1. Wear your braces etc to lessen future damage & more surgeries & pain & specialist. Screw people who look! Make them look SEXY GIRL! You’re beautiful!
        2.Try hard to make MANY friends! The really great ones will show their true colors in time but at your age have as much fun as you can! Meet different people, different races, cultures, ages, abilities & disabilities! You’ll be surprised & you’ll surprise yourself at your own growth! Through the good & bad. And there will be lots, but that is LIFE! Have a LIFE!
        3. Laugh, love, be crazy, do some silly stuff! No arrests, no mug shots, no hurting people physically or emotionally (on purpose).
        4. TRAVEL WHILE YOU CAN MORGAN! See the world at the speed that YOU & YOUR BODY need to go! Take tons of photos & videos & back them up!
        5. Try journaling (I should try)
        6. If you do NOT like a doctor or even a nurse FIRE THEM! Seriously! I was a Nurse for 24+ years & wish I’d seen it way way more! You deserve good people who care about YOU & remember YOU!
        7. Try to see a counselor or join a group if you have one around. 😳 I’ve been so sick that I’m behind. Not good!
        8. Try new things! 1 life! YOLO!
        9. Join these EDS & mental health boards. They are a great community & have tons of ideas & kind words of support & actually know many doctors in different areas around the world!
        10. Smile as much as you can. Maybe someday you can share your story in a short book! Hugs kiddo ❤️

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      2. I should of realised by the hem in the band ! I hope you get to see a urologist soon ! I get bladder instillations at st Mary’s hospital they put a cocktail of drugs in my bladder ! I was also on that but for incontinence not for interstitial cystisis. How did you find it ? That’s awful about your vision ! I was always like that can’t blame my illnesses . Yes the mental side makes me so unpredictable haha. Thank you for taking the time to give me some positive thoughts Amy. I am seeing the ankle and foot specialist next week. I met many people in Spain where I was happier but I have just bought loads of art materials to try and do some creative things. I have already been arrested but it was a huge misunderstanding and years ago so no charges ! I try to not offend people but my honesty can come across as rude ! Even on my placement I am still in quite a lot of debt so I hope to pay it all off one day and travel! I am awful at backing up pictures but many are on Instagram ! I kind of use my blog as a journal I am glad you try ! I have made formal complaints about some medical staff in the last . I am soon also to be starting mentalisation based therapy I hope you can get back to your councillor soon! I am a part of some Ed’s groups on fb 🙂 I would actually love to write a short book or do an illustration book of my wrists don’t play up to much! It’s frustrating not being as good at art as I once was xx

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  35. I can’t fathom what one with various disorders is going through ……I can’t imagine their pain…….it’s too much for me to handle…..but you have all my admiration …..for facing such adversities with positive outlook ……no doubt u will survive…..

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  37. The interview threw light on something that many go through yet in an honest way. Too much to bear .. strength and love to you

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  39. Thank you for sharing your journey. Good for you for sticking out university with the odds against you.
    I went to the same uni as you for ITMB whilst dealing with various mental and physical disabilities too! Hope the rest of your degree goes well 🙂

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      1. Ah thank you! I’m sure you will 🙂 it was IT for management of Business. So a split of tech and business, proven really useful! xx

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      3. Ah amazing to have done a placement though! Yeah give yourself a break if you need to absolutely.
        I did a summer placement whilst studying and then managed to get on a grad scheme in the industry and have stayed there 🙂 xx

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      5. Yeah I had to do a few of those (I hate them, absolutely no idea how I passed)! I’m glad I pushed myself because I was curious if I could y’know, but there are definitely pros and cons with big and small companies. It’s just finding which work for you best 🙂 My partner works at a smaller company and massively prefers that xx

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      6. That’s so good you passed them ! I think the smaller ones just make more allowances for me and bigger companies are more corporate and taller org structures ! Glad you are doing well in your position though xx

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  40. what an excellent interview Morgan. I live with a number of invisible illnesses and I totally understand what you mean about having to cancel outings at the last minute and losing money over it, etc. You give a good interview. I’m sorry you experience so much pain etc. but you sound like you’re living your life as best you can and that’s encouraging!!

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    1. Thank you so much yes I do try some days are easier than others Pamela , like I am sure with many people with chronic illnesses. Really struggling to do the uni work associated with my placement and taking a lot of time off but trying to be as normal as possible x

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