Hi everyone, thanks for all your supportive messages to the people who write these stories. This week, lovely Beth shares her experience of studying while living with Lupus. Thanks for sharing part of your life with us, Beth. Can anyone relate? Leave a comment below. And as always, don't forget to send me your stories if you'd like to have them shared here
"In August 2013 I discovered that I had been accepted into university, I was going to start my first year studying Film & Television, and American studies. I was so excited for this opportunity, however, I didn’t realise that I had lupus at the time, nor did I realise that it was going to get worse as I took a very big step in my life.
September came and I moved out of my parents’ house for the first time. I wanted to be well so that everything would run smoothly in this new chapter in my life and that I would settle in well, knowing that I was three hours away from home and my family weren’t there to help me. The first week was a nightmare, I had never felt pain like this before, I was unable to move, my joints were so swollen in my first week of lectures I missed my whole first week of university, I couldn’t leave my flat. I spent two months through September to October missing lectures weekly for fatigue (I still do now) and the inability to walk, before I was finally referred to a rheumatologist and in November diagnosed with lupus (SLE).
Despite being on medication I still struggle with lupus, and it has had a big effect on my education. Sometimes I’m physically incapable of getting to university: the university is a 20 minute walk away, uphill, and on a bad day I simply can’t walk it. A taxi to the university costs around £4 each way and the buses have proven unreliable, or you cannot get sat down. If I have a flare up and I walk, I must set off an hour earlier to make it to my lecture on time, by this point I am exhausted and struggle to concentrate for the severe strain I’ve put on my body. I am incredibly grateful for email. While the university have an attendance rule, as long as I study from home and explain to my tutors that I’m unable to attend they understand.
I have found that I struggle to type most days, and I cannot hold a pen to write: Taking notes in lectures is vital, I need to be able to understand the information on the lecture slides that my tutors are verbally expanding on and I went through weeks trying to write notes in my classes and being unable to keep up with the fast pace of note taking. This resulted in me feeling like I was falling behind the rest of the class because I wasn’t taking down much information as I could. I had a meeting with the university’s Student Support Workers after my diagnosis and they gave me incredible support, for each lecture I now have a support worker who sits through my lectures writing notes for me. This really helps me keep on top of studying. I attend the lectures as normal and after the lecture the notes are typed up for me and sent to my email account. I have also been granted a disability allowance from Student Finance England which allows me access to money to buy equipment such as voice recognition software so that I can speak rather than type up essays and a Dictaphone, to record lectures for later referencing.
A huge part of university life is filling up a bibliography by reading sources in library books, I find it incredibly difficult as I can’t always keep the books open, or even hold the books some days. Luckily there is a lot of access to electronic resources and e-books, and the library have given me a one week extension on any of the library books that I reserve to give me chance to look at the books at my own pace.
As this was my first year at university, I was moving away from the people that I knew, the friends that I had. It was awkward to make friends; people I would meet would invite me out to things and I couldn’t attend at all, or for long, as I was so tired all the time, or I was in so much pain and it was hard to explain to people, as I myself didn’t know at this point what was happening to my body. The lupus rash looked ugly; people would stare at it and I felt too uncomfortable to be around them. It made me incredibly paranoid. Luckily, I have overcome the insecurity and I have good friends that understand my illness and bring events to me if I can’t go to them.
The biggest concern I had with lupus affecting my education was trying to keep up with deadlines. Each essay we are assigned has so far been a maximum of 2,000 words, which while it doesn’t seem a lot, it is a lot of writing for someone that most days can’t use her hands to change the channel on a TV remote. Everything is electronically entered, and while that made it easier for me in respect of typing, I was still incredibly slow at doing so. I had a meeting with a lecturer once whose essay was due in and I burst into tears “I can’t do it, my essay won’t be in on time, it hurts just too much to type” I was promptly talked through the availability of deadline extensions, due to my circumstances, and have been granted three week extensions on each piece of individual coursework that I must do in order to pass my course. This takes so much stress away. I now know that if lupus is giving me a bad day, relax, take that day off to recover; I have other days to focus on it.
My diagnosis has made things easier, though. The university have put things in place to help me when I’m unwell, and this makes life much easier for me. I relax much more knowing that I have support services in place, and I am managing to achieve good grades. I don’t think I would have continued into my second year of university, or furthered my education ever again, while struggling to deal with lupus without these measures in place; it was hugely difficult and very upsetting that I felt limited in what I could and could not do. This has just proved to me that things can be done to help people like myself, it isn’t impossible any more to achieve what I want to and my lupus flare ups have reduced massively thanks to the measures that allow me to relax more about my education - I don’t feel constantly on edge."
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Beth has given us consent to share her story.
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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email me at communications@healthunlocked.com
xo, Leilah
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Beth's story is a very familiar one. SLE or systemic lupus erythematosus, difficult to say and even more difficult to live with, is a "Cinderella" disease. Dr Daniel Wallace made the observation that should lupus be a predominantly male disease, rather than female, there would be better funding and support.
Women are affected to the ratio of 9:1 during their child bearing years; although men and children can have lupus. It is difficult to diagnose, unless someone presents with the "classic" signs of malar rash, positive ANA and lupus nephritis. Many women have waited for decades to get a diagnosis, often dismissed as being "all in the mind". Many doctors simply know very little about SLE.
It's not just the physical symptoms: SLE can affect every body system from the skin to the brain, all internal organs and neuro-psychiatric manifestations.
In 2003, LUpus Patients Understanding & Support (LUPUS) was formed to provide free information and free psychological support online. We are also here on HU.
It is as important for people affected y lupus have psychological support and understanding. It is often said that while only one person in the family may have a diagnosis of lupus, the entire family suffers from SLE!
I wish Beth well. Her university sounds supportive and while it is more difficult to study, she should feel able to ask for support. This should also apply to her family and friends. It can feel overwhelming at times. Please feel free to contact me, Beth, any time. You are not alone!
Sending good wishes from LUpus Patients Understanding & Support (LUPUS) at HU.
I’m in an incredibly fortunate position where I have an incredible group of friends and have since graduated successfully. Support was vital to obtaining my education and to becoming the person I am today - everyone, regardless of their position needs that support system.
Therapy was an incredible outlet for me because the impact of chronic illness, lupus, on my mental health was huge.
We're very grateful to Beth who shared her story with us and to HealthUnlocked for helping to raise awareness of lupus and the impact it has. If you are interested in chatting with other people affected by lupus, the LUPUS UK Community on HealthUnlocked is an excellent place to visit. Please just go to healthunlocked.com/lupusuk
i am very proud of you for all the hard work you have gone threw and very thankful for the college stepping up to help you to get threw this and to help you to be able to get great grades with their help ..this is so fantastic...wow so proud of you...i tried to do some college myself but didn't get the help you are getting but again i didn't ask for i had known most of what i was studying ...but when i went to test couldn't pass the place where i would of worked did pay for my tests so i could try again...they just thought i was over stressed but still didn't pass...so i am so proud of you being able to do this ....love and much happiness ...take care and stay safe during the journey ...
I understand that I am very fortunate in my situation, privileged to have had the support, funding and the support system because sadly not everyone in need is eligible and I simply feel like one of the lucky few. Anyone who needs support should never have to feel the fear of asking for help.
I hope your journey has been easier as the days go by, two old crows.
It can truly be so difficult to keep on keeping on when you’re truly so ill beyond words, but I’m proud to have made something of it and have an incredible support network.
Congratulations on your fortitude, your courage and your achievements, Beth. You have done amazingly well. May God grant you continuing strength in the years to come.
You are an inspiration to all students and your story should be featured in the prospectus of the Uni as many struggle with no illness so your determination shows ' where there's a will there's a way ' . My son gave uni up after 10 weeks as he felt isolated and mentally fraught with anxiety. The year after he went back on another course . The new friends he met pulled him through to get a first class degree then return home to study for a Masters , receiving Distinction. Just shows you can turn your life round with support which you have but only you can see it through .
Focused1, thank you for your kind words! My family are proud and are, fortunately, a very supportive bunch of people in all that I do.
I’m sorry to hear about your son, anxiety can be so awful and it’s hard to explain that to people who aren’t in your own headspace! I’m so glad that he found his people, everyone deserves and needs that to get by!
Thank you for sharing your story. I didn't realize lupus affected people like that. Lupus has really pushed you to struggle but you didn't give up. Well done to you for your determination and persistence with your education.
It's so good to know that your university is so helpful in providing you the support you need.
You’ve made my day letting me know I opened up the Lupus door a little more! I’m proud of being able to share my struggles, I see no shame in being honest but I can truly understand the anxiety of oversharing! The uni were incredible and it’s unfortunately something that many are surprised to hear.
Oh my! did your story ever resonate with me! I was never officially diagnosed (for an odd reason -- my Father had lupus, and back in the day, in this country (US) lupus was not generally accepted as a "real" disease. My parents divorce was partially due to Mom's refusal to believe that Dad was really sick. Local docs knew this story and were reluctant to saddle me with that same diagnosis.)
ANYWAY... my college years were the roughest. I have attributed that to the usual maximum-lupus-flair-age of being in my late teens and early 20s, but I now wonder if it also had something to do with my diet back then. Living in a dorm, eating mostly cafeteria food and fast food, I was eating a lot of sugar and gluten (flour and sugar are staples of US Southern cooking.)
I made it through school, but did not try graduate school as I did not think I could get through. But after I returned home, I was much better because: 1, I was older, and 2, I was back to eating a much healthier diet. But even after college those fatigue spells continued to come and go, until: 1, I was diagnosed and treated for APS, and 2, a doctor found a hormone imbalance -- too much estrogen -- and put me on a compounded, topical progesterone cream, and 3, I found I did have a gluten allergy. All that plus age.
So, hang in there. You might try going gluten free for a month or so and see if that helps. If your story parallels mine, you will recover. Its just that the prime lupus season of our lives inconveniently coincides with the prime start of our careers. Good luck!
Gina in West Virginia (graduate of Vanderbilt U.--I had permission from some profs to lay down on the floor during class to lessen my chances of passing out.)
Gina, thank you for sharing your story! My mum is actually a celiac and so when I’m home, gluten is very heavily avoided and I can’t say I feel better or worse for it right now, it’s a process - isn’t it!?
I truly believe that the stress of the changes in life had a big impact on my flares, starting life out as an adult was the pits for me and then uni on top of that - who has the time to breathe, let alone be chronically ill!
I LOVE US Southern cooking, I’ve spent a fair bit of time in Arkansas and not much comes close!!
Beth, I have huge respect for your determination and diligence with your studies . Also, it is so good to see the support that is available for you to ensure that you can make the most of your ability. Keep up the good work.
I seriously have been lucky to find “my people”, but please be assured that I have had my fair share of bad people at uni and through life who have tried to take advantage, bully etc but I came out the other side!
Well observed, rrahman! It’s been a while and a lot has happened...
I graduated from university, I was well enough to partake in a student exchange program (but the travel health insurance came at a large cost!) and I spent 6 months studying and living in New Hampshire, USA. I went straight into full time work after graduating and I’m still here, I bounced in and out of remission and then back in remission again and I’ve travelled a lot of the USA and a little of Europe over the past few years.
Most importantly, to me, I started my blog and YouTube channel about Lupus and my love of makeup. It really allows me to champion my love of makeup and use the little platform I have to talk about my life with lupus in the hopes of raising a little more awareness. I’ve done a few minor media discussions about lupus, l wrote for Lupus U.K, most recently, but earlier in the year I featured in an awareness video for a company called Hashtag Our Stories.
It’s been very exciting as I try to make something so negative, a little more positive for me. I definitely couldn’t have done it without feeling supported. I’m in an incredibly fortunate position to have friends and family that are very in sync with how I’m coping and willing to learn about Lupus so they’re a fantastic support team for the tough days!
I really commend your endurance and dedication to your studies. Sometimes, we must ask for help. I’m so glad you did.
You didn’t mention your family at all except that you wanted to be independent. Have they accepted your diagnosis and are they supportive when you’re back home? Do you go home?
I’m so sorry your Mom didn’t believe your Dad. That must have broken his heart. I know the feeling. My family abandoned me when a severe nerve compression injury almost killed me. God bless you.
It’s funny that you mentioned I didn’t mention my family, in my original draft of this I DID mention them but because I was writing about studying I felt I was waffling too much about my family support network and not being succinct enough - honestly, they are the best, particularly my mum who is the absolute reason for who I am today, physically and mentally her mini-me (she’s usually asked if she’s my sister, despite the 24 years difference but good genes!!!)
My dad and younger brother are there when I need if I ask, but it’s definitely a case of Mum knows best and knows when I’m unwell and what I’m thinking without having to ask and you know what, that can really take the pressure off feeling like when I am unwell I am reliant on everyone else. Mum just KNOWS when to ask if I need help or when to do something for me (mama instincts I guess!) and she also knows when to tell me to suck it up, be brave and carry on! My family are my fallback and I’d be lost without them.
That’s wonderful and as it should be. Take care and good luck.
Thank you so much to Beth for sharing.
What awful daily struggles Beth deals with but from her story, she comes across as so mature and understanding. I knew Lupus was an awful disease but I didn't realise the impact on someone's life.
Well done Beth for speaking out and sharing your story, you are an inspiration.
Thank you for taking on board my experience as an account for what living with lupus is like! I feel like I’ve done my job here, now - raised awareness!
It’s funny you mention that I come across as mature, I firmly believe that I had to grow up and stop crying about things I cannot change and just crack on with it.
Dare I say - as lupus helped me become the person I am today - that it has good aspects too in the long term. Yikes!
Hi there Leilah/Beth - your story brought back memories of my own journey with Lupus - no-one can understand this illness more than someone who has experienced it - it is awful. Well done on coping with it so admirably. I wanted to ask though if you have been tested for vitamin and mineral deficiencies and hormonal deficiencies as it was found my levels of zinc and magnesium etc. were on the floor - causing a lot of my symptoms - but the thyroid issues took 13 years to sort out as my blood test showed normal even though I was at the bottom of the range - once I got onto thyroid hormone my Lupus tests went into remission - If you can afford to go somewhere to be tested privately as it is not done on the NHS - you need zinc - magnesium - B vitamins - Selenium etc. - and Vitamin C would help you now to keep your adrenal glands uplifted to give you more energy. I think I can see zinc deficiency within your face so might be worth a try. All the best to you in your Lupus journey.
Hello Leilah - have you researched Low Dose Naltrexone? It may help you. If you contact the ldnresearchtrust and ldnscience.org they will have more information and can put you in touch with a knowledgeable Doctor.
What is wise, is to not listen to anti-vaccine rhetoric from a stranger on the Internet, specifically one trying to preach something that can potentially kill people like me.
This is not welcomed here, you may go back to your own ‘reality’ because you surely do not fit in mine.
444nM, per this recent reference, there is no evidence that the commonly available vaccinations in the USA cause SLE. I would consider that Beth and others that live with and support those with lupus would know far more than you about the advisability of vaccinations.
What is indisputable is that many of the medications used to minimise the impact of SLE DO suppress the immune system. The best defence against that is for the person with SLE to be up to date with their vaccinations. That may preclude live (attenuated) vaccinations, because of the immune compromised nature of living with managed SLE.
My reason for commenting is because I support people who also live with compromised immunity from chronic leukaemia and the treatment drugs are used for both lupus and chronic leukaemia. One of the biggest killers in my community is infections like flu and pneumonia. 444nM, by spreading your misinformation, you are putting at risk members in our respective communities, because we are reliant on the level of infected people in the community being low to protect us from potentially fatal infections. Our crippled immune systems can't fight off infections without help. You are also putting at risk children too young to have vaccinations - hence the totally unnecessary loss of life in Samoa recently on top of the resurgence of measles in the USA and elsewhere where endemic cases had previously totally disappeared due to successful public vaccination programs.
If only those who think they were knowledgeable about vaccination 'dangers' took the time to find out the truth, they would be shocked! Nearly all of the misinformation comes from a handful of discredited sources, which gets amplified into fake news by retweeting and other social media repeats. Googling "Russia fake news vaccinations" is an eye opener. See also
I am sorry that you feel hostile toward me, I do not mean to offend. There is a substance in food called canavine that makes Lupus worse and it is found in large amounts in onions, parsnips and alfalfa. Anyway, I will not post any more to you, good luck.
Well done to you Beth, standing up for yourself and speaking out. I don't know what was said, but I am so pleased you felt able to respond in such a clear and positive way.
I am also immune compromised and feel not enough has been done to make it clear that much of the information and so called studies concerning anti- vaccine have been discredited.
I admire your resolve in the face of such a difficult diagnosis and wish you all the best in your future.😊😊
Oh well done Beth on what youve said here, this is close to my heart. My 3 year old granddaughter has JIA (Juvenile Idiopathic Arthritis), she has mainly the Uveitis so it affects her eyes. She is on immuno suppressants as well so what you've said is correct.
444nM, it's time for you to acquaint yourself with reality before public health vaccinations as I have done. Go and visit a town which has a cemetery going back to at least a century. Wander around and observe the sadness recorded in stone of all the deaths of young children you just don't see today. Those illness don't exist and young children don't die because of the effectiveness of public health vaccinations. Some diseases have been totally eliminated and your dissemination of incorrect information is preventing the elimination of other illnesses and responsible for unnecessary deaths.
Never realised lupus could be so debilitating. I will never complain about the odd twinge ever again. You are a very determined youngster and deserve to do well. Thank you for sharing your story. Love from the UK xxxxx
Hi, I'm sorry to hear you suffer from such pain but I am pleased to see you are getting support from the University, I work so instead they try to sack me all the time. So when you start work make sure your employer knows everything and they will support you because I can tell not getting that support just gives you worse bouts of depression which does not help you deal with the pain.
I’m so sorry to hear that you’re going through that, that’s so horrible and I imagine it weighs very heavy on you.
That is sterling advice about telling your employer, a lot of people feel it will affect them negatively if they disclose but you have a legal backing and a moral one too if you give notice of illnesses/disabilities! My current employer has been told absolutely everything, every detail of Lupus and Depression and the ins and outs of chronic illness - the HR department were incredibly sensitive about it all and I used Lupus UK’s “Information for Employers” booklet to guide the conversation - if anyone reads this, hit up Lupus UK’s resources because they truly are great.
My last employer at a cinema - let me tell you - they were not willing to make adaptions when I was sick, they were not willing to listen to my concerns and they didn’t care about their staff, full stop, let alone the chronically ill ones. I left in a heartbeat, but I had the privileged position of being able to as others cannot.
I recently went to Jason Vales place in Turkey. Juicing and yoga and exercise for a week. Girl there had Lupus for 8 years and it went away. Staff said it was common. She emailed us a month later to say she had been to see the doctor and they said she had probably never had it!! Nuts
I have researched juicing and its based on research by Gerson who says that all illnesses in body are created by two things. 1 Inflammation 2 toxicity. Sounds simple but my research since has shown that this simplicity works
This is a long video but convinced me about my chronic asthma. Scince doing the work I run 5k on park runs regularly now!
I have m.s., not lupus. But I also have a couple friends with lupus. It's horrible. As is M.S. We're all old now, though my Lupus friends have had it not knowing since about the time you're at now. It's hard living with it, as it is M. S. What I have learned are 2 things. 1. The autoimmune diseases can really be hard. I got so bad with decades of pushing through M.S. till I had to stop working with my Neurologists urging me to give it up. I refused for years. I had someone drive me from estimate to estimate. Learned to climb ladders dragging my useless legs up using my arms only. Lots of dumb stuff likr that, but I kept on going for years that way. I learned all kinds of tricks to keep on going. Too much.... There are lots of bad things that can happen...but....don't give up! You have to keep fighting your hurdles. I used a cane for more than half a decade to move just my body. Then balance only.... Now. Nothing!
2. Diet: I spent almost 2 years essentially comatose. I fought my way out of years of heavy fog by un-intentionally rebooting my gut by stopping eating. Living off fruits and veggies juiced using an inexpensive juicer. I did so for several years to keep from slipping back into the comatose state after eating anything. A single egg no sides sent me into the walking dead state for the day. So don't eat anything, at least till diner so you could slip back into the coma for the day. I eventually started using a heavy duty blender to get some bulk from the fruits and veggies. Eventually, I was able to re-introduce small amounts of lean meats/fish. Long story short, inspired by the Whal's Protocol, I eliminated processed foods, and stick to healthy eating. I learned to cook healthy and now I'm better than decades of he double toothpicks. I'm 5+ years relapse free. My neuro tells me I'm likeli done. I've collected lots of "gifts" from years of m.s., But, I'm loosing some, including some doc's said were for life due to damage done that couldn't be undone. In short, focus on healthy eating. It can do what no drug can. Yes I did years of all the best M.S. drugs.... Last 5+ years, no drugs, just serious healthy eating. Way too hard for most people, but there are people with all kinds of auto-immune diseases finding nutrition as their best means of truly fighting their disease.
Fight the Fight! You can do it!
Beth
You are very strong and have achieved so much! You go girl....ain't no mountain high enough. Wishing you a very successful 2020...you got this!
It happens. Itis hard. It is on everything in our bodies. And it influence our psihological status. And contrary. I have my story. On short I'm convicted, what dont means that I'm right that lack of iodine ruined my life. I become highly disabled and went in social isolation. No to bore other people with my troubles. Internet is my life. I have read about my trouble a lot. I have find out that low carbohydrates food and iodine helps me a lot. Nothing sweet, no bubbles ... Iodine is nessesary for us and some people do iodine protocols for different troubles. Interesting reading. Even for viruses.
Your mother must be a wonderful person. Her no gluten diet means no gluten for longer time to have effects. With no even a smallest mistake. More radical diet is no carb diet. But my opinion is that some low GI food is necessary.
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