Emily describes herself as a goth who loves makeup. She has Asperger’s Syndrome and suffers from other physical and mental health conditions which greatly affect her quality of life. Here, she speaks of how she has tackled these conditions and how the Irish system has failed her on many occasions by not providing her with adequate care. She also describes how cannabis has significantly changed her life, by doing what conventional medicines couldn’t. Twitter: @lilithlunalou
Hi Emily, firstly thanks so much for devoting some time to speak to us.
Can you tell us a little bit about who you are?
I’m 24, I live in County Cork.
When did you first find out you had a Desmoid tumour?
After my last surgery, my abdomen became unbearably itchy and it wouldn’t go away. Then lumps started to form. I kept going to my Doctor, [redacted], to seek further help. He told me it was just the stitching that needed to dissolve. He had previously told me it would only take a couple months for the stitches to dissolve. Four years later, after many hospital admissions, being in constant extreme levels of pain and lumps getting bigger, I finally got them to take a scan and biopsy. I was 21 or 22 when I found out I had two Desmoids. I possibly have a third one as I’ve a third lump, but they are refusing to look into it.
Why won’t they look into the possibility of a third Desmoid tumour?
My case always gets overlooked. My partner wants to go to the newspaper or radio station with how I’ve been treated over the years. They just don’t seem to care. I keep asking my GP to ring them or email them and she keeps saying: “They haven’t gotten back to me. That probably means they didn’t find anything sinister”. Yet when I question the multiple Oncologists, I see they always act puzzled and ignore my question about the third lump. I never seem to see the Oncologist that was assigned to me, Doctor [redacted]. Women don’t get taken seriously by Doctors, especially if they are autistic. Whenever my partner comes in with me, I get treated with respect. If I go to appointments with another female, or by myself, I get ignored and rushed out the door. They give little information and little to no help with issues.
I’m very sorry to hear that. It’s disgraceful to be treated that way by anyone, but especially by medical professionals who have a significant influence on your health. When did you discover that you had Familial Adenomatous Polyposis?
I discovered I had FAP at age eighteen. It’s hereditary. We knew at a certain age that we would need a scope to see if we inherited the same condition as my dad.
When were you diagnosed with Asperger’s, and anxiety, respectively?
I was diagnosed with Asperger’s syndrome at age eleven or twelve. I suffer with anxiety through trauma that I’ve experienced and have not been diagnosed with anxiety disorder.
Have you attempted getting a diagnosis for your anxiety disorder before?
(If so, why do you feel that they were mistaken by not diagnosing you with one?)
I’ve tried to get properly screened for diagnoses and every Psychologist keeps telling me they are not quick to diagnose any more. It’s been over ten years I think, I’m overdue a screening for diagnosis. Emily laughs They keep telling me you may have (specific condition). Then I get told I don’t have it. And then I get told I may have (specific condition) again. I got treated very badly in [redacted] in Dublin, while under the Consultant, [redacted]. They wouldn’t allow me pain medication for my tumours.
I had my GP send a prescription letter and all my medical history to them before I even went up for admission. I was there four months and three out of those four months, I had no pain relief. That is only the tip of the iceberg of how I got treated there. As a result of how I got treated, I have no desire to seek help from Psychiatrists and Psychologists any more.
That’s terrible, I’m so sorry to hear that your trust has been broken like that by psychological professionals. I hope others will handle your needs better and treat you with the respect you deserve, by listening to your feedback. Do your conditions affect you significantly on a day-to-day basis? Can it vary?
Yes, I’ve other conditions such as Schizophrenia and BPD (Bipolar Disorder) which interfere with my social life greatly. Before Covid, I spent most of my time in my room. I didn’t function, I didn’t shower, eat or sleep. I merely existed.
What’s your view on the existing resources available in Ireland for Asperger’s Syndrome?
Are there enough help and resources out there for people with Asperger’s in 2021?
¹Aspect is a very good government-funded organisation. They have key workers that get assigned and best suited to us. They help with whatever you struggle with, or they can simply just listen if you need to vent. Aspect is amazing and has been the only constant support.
What kinds of treatment have you been prescribed for your conditions, and how successfully have they worked for you?
I’ve been prescribed various different antipsychotic medications and antidepressants. All they did was make me gain weight and sleep all day. I’ve an eating disorder as well, which made the gaining weight part very traumatic for me. As well as it has made my legs swell up and walking now feels like walking on glass or pebbles.
When did you first become interested in cannabis?
My partner smokes it for his pain. He’d be on the couch not able to function properly if it wasn’t for cannabis. He kept trying to convince me that it would help me. I kept trying and nothing worked. The odd time we’d get something that suited me. We discovered I have extremely low tolerance for THC. So now I only use CBD products with low THC.
When did you start to consider using cannabis therapeutically/medicinally, and how has using it in this way helped you?
I’ve tried it on and off for various different reasons. Summertime last year, my partner got ²Orange Bud. But it was very low in THC, so I tried some and to my amazement I felt normal. My mind wasn’t racing, I wasn’t constantly panicking. I was able to eat without getting sick. I could walk without feeling like I was walking on glass. Any pain I had, physically or mentally, it either went away completely or it was at a very manageable state. I got quality of life back, which is amazing.
That’s incredible, I’m very pleased to hear that. How have conventional medications helped with your conditions, compared with cannabis?
Other medications either made me worse or didn’t do anything at all. Cannabis has vastly improved my life. My own family has said there’s a huge difference since using it.
What’s your viewpoint on the Medical Cannabis Access Programme?
I think it’s great. They need to add all health conditions to the waiting list. I think it should be legal and regulated now, so our sick, including myself, can have safe access. I think we should do it the way Holland has done it. Legalise it, regulate it. Let people grow three, four plants at home. They should keep it illegal for dealers to sell it; only legal businesses can sell it. That way there’s no sprayed or chemically-grown cannabis being sold. Only the natural plant being sold.
How important is the full legalisation of cannabis in Ireland for you?
Very important! (Without it) I wouldn’t be able to walk into town. I wouldn’t be able to leave my house to do simple things like shopping. I wouldn’t be able to do basic house work.
Do you believe it can happen organically in Ireland, or will we need to see cannabis reform in the UK before it’s taken seriously here?
Not 100% sure. I think our government will probably wait till England follows suit with the States and Amsterdam, before they’ll take it seriously. I personally think Ireland should take note from Amsterdam. Also, I’m sure the EU has already acknowledged cannabis as a medicine, so Ireland can only refuse for so long.
Emily, thanks for chatting with me. I’m glad to hear that cannabis has benefited your life and I wish you all the best moving forward.
¹ For more information about Aspect, check out this recent Evening Echo article:
² To learn more about the Orange Bud strain, see the following page on Leafly: