Jenni Pettican

@jenni-pettican | contributor
For a long time I feared telling people I was sick, especially when I didn’t know what was wrong, but here I can share how my illnesses affect me and spread a little awareness for my conditions.
Jenni Pettican

Back Pain, Spinal Surgery: Being Judged for Sitting Down at Work

After working in the retail sector for as long as I have, I’ve learned that customers are inquisitive and tend to point out when something is different. In my four years of working at my local cinema, I have been asked a plethora of questions about the cinema: “Can I take my drink in with me?,” “I’ve only got cash – is that alright?,” “You’re Screen 3, Row H, Seats 10 and 11″… “So can we just sit anywhere?” (*facepalm*). Other times I get asked slightly more intrusive questions: “Why do you spell your name like that?,” “Do you have a boyfriend?,” “Did you intentionally dye your hair to match your shirt?” (my dip-dye pink perfectly matched the stripes down my sleeve – not intentional). Eventually you learn how to answer these questions and let them brush over you. However, when I returned to work between surgeries I did not have such a great experience with customer questions. The first day I went back, I tried (way too soon) to work as if nothing had happened, but after just short of an hour on my feet I couldn’t hide the tears from the pain in my back any longer and I had to sit down. So my subsequent shifts I was allowed to sit and take guests tickets, using my stick to get up to use the scanner for e-tickets. Many of my colleagues saw me struggling with my stick and asked why I’d even bothered to come back to work between surgeries (the answer: because I need the money, but that’s a separate issue entirely). Customers, however, were not so kind. Although most comments were innocent, one comment still sticks out in my mind. I said my usual “Hi guys” as I waited to be passed the tickets, but without any pleasantries this customer said, “Why do you get to sit on a chair and he doesn’t?” I felt this was a little rude and direct and, although I shouldn’t have to divulge the fairly personal health reasons as to why I was sitting down and my colleague on the other side of the building was standing up, I simply said, “I had spinal surgery a few weeks ago” – an honest answer but definitely not the full story. When I had revealed this small part of my journey to other inquisitive customers, they would reply with an apologetic “good luck with that,” but instead, this customer said, “Don’t give me all that.” This upset me, but not wanting to let it show I took their tickets and sent them on their way. I didn’t want to stay quiet. I wanted to tell him I was a 21-year-old chronically ill woman who has been in constant and often extreme pain for the last two years, who was unable to stay at her university due to debilitating symptoms, who needs daily medication to manage these symptoms and who has already had three surgeries in the last four months (the most recent being two and six weeks earlier) and was awaiting a final one but needed to work in order to make enough to get by. Sitting on a chair does not stop me from doing the same job which enables you to see your film; in fact, it enables me to do a job I wouldn’t be able to do without sitting. The amount of people who simply felt the need to point out I was sitting down was astonishing to me, especially since my walking stick was clearly visible. With most of the comments I used my usual trick of laughing along with the customer and brushing it off. Many innocently remarked that it must be nice to be able to sit down. And yes, it has been nice in the sense that it has allowed me to continue working despite my surgeries, but the fact I am in pain and unable to stand and walk unaided is not so nice. But no one asked me why I needed a walking stick, so… Dear Customer, If anyone is sitting down at work where you would normally see someone standing, there is probably a reason for it. An important reason that meant an employer had to make reasonable adjustments for that employee to do their job. The reason is none of your business. If someone is genuinely interested, I am quite happy to advocate for my conditions. I take great pride in spreading awareness. But please do not ask and then be rude about the answer. You asked me not to “give you all that” – I barely gave you one percent of my journey. I told you about my surgery and you still gave me grief. I wish I could stand up without being in increasing pain. I wish I could do my job without having to answer such questions and having my weakness pointed out to me over and over again. All I’m doing is trying my best to pay my way in this world. Surely you can understand that. I’m 21 – I should be graduating with my friends, going out to parties, being “young,” but I can’t because I’m sick and I will always be sick. So the next time you see someone or something that is different, please don’t point it out. There is a reason for it and you don’t know how much pain your words can cause. Next time, please think before you speak because someone may be fighting a battle you know nothing about. Be kind, always. Many thanks, The chronically ill young woman sitting down at work We want to hear your story. Become a Mighty contributor here. Thinkstock photo via FlairImages.

Jenni Pettican

The Most Difficult Part About Receiving Treatment for POTS and EDS

On the eve of having a surgical procedure to try and treat an aspect of my condition, I’m anxious. Anyone would think I’d love to take a week or so off work and be forced to take it easy, but I’m worried about how hard it’s going to be on the rest of my body. I have postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome. A really difficult thing with a chronic illness is pacing. Doing too much can make you too ill to get out of bed for a few days, doing too little means you body becomes deconditioned which can make you too ill to get out of bed for a few days. It’s a vicious cycle. And after any kind of treatment you have to rest up, but try not to rest too much. After this procedure (a blood patch to hopefully help seal up a CSF leak) I have to take it very easy for six weeks and I may have to have three of these procedures, meaning I’m taking it easy until the end of April. I can’t lift or bend normally as it really affects my POTS and my pain, but after this procedure I am strictly not allowed to, I won’t even be able to push myself around in a wheelchair or walk the dog in case she pulls too much, meaning my regular exercise goes out of the window. This worries me, as the last time I just stopped doing things was before I was diagnosed and it was the worst my health has been. I couldn’t get out of bed and my mental health suffered majorly. So I’m worried about finding a way to keep my pacing strong without risking the effectiveness of the treatment and/or a major flare up. Another difficult thing with chronic illness is that treatments aren’t guaranteed to work or even help. I am worried that it won’t work. It’s taken nearly a year to get my POTS stable enough to have the intracranial pressure monitoring (which I had in November) to find out if I did have a CSF leak, get diagnosed with a CSF leak and find a way of treating it. If it doesn’t work, I will have wasted another four months and three procedures to be back to square one. I worry if it doesn’t work that I will have let myself, my family and my doctors down as everyone has put in their best efforts to help me get rid of my “everlasting headache,” as I like to call it, and my body just doesn’t want to respond the way it should. But we all need to stop feeling so guilty for being ill, it’s completely out of our control. But the most difficult thing I’m finding about getting treatment as a patient with chronic illness is that, if it does help, friends and family think you’re am cured. And if it doesn’t help, there’s an expectation that it should have helped. My last operation was just an invasive investigation yet people who knew this still thought it would’ve made my headaches disappear. I understand the notion, of course. If you break an arm or a leg, it’s painful, you go into hospital, they plaster you up, you spend six weeks recovering and it’s fixed. When you have chronic illnesses, however, there’s so much more to contend with. I manage my POTS with medication but I rely on it and if I forget a dose I know about it. My EDS causes major fatigue, widespread pain, unstable joints and and gastrointestinal issues and unfortunately I am going to have to live with those symptoms for the rest of my life. Whether this treatment helps to get rid of my “everlasting headache” or not, I will always be chronically ill. Let’s say you went to the doctor for a chest infection and you happen to also have a broken arm. The doctor gives you some antibiotics which cure you of the infection, but your arm is still broken. My story is just as simple, in a roundabout way. I went to the doctor for a headache and (after two years) they found the cause of the headache. I happen to also have two long-term conditions called POTS and EDS, they did some treatment for my headaches and one finally worked, but I still have POTS and EDS. With chronic illness, I am often made to feel that if I go into hospital for something I should come out and all my problems should be fixed. But remember you can’t expect antibiotics to fix a broken arm, so don’t expect a procedure for an small aspect of a condition to cure someone of a chronic illness. It’s called “chronic” for a reason. We want to hear your story. Become a Mighty contributor here .

Jenni Pettican

7 Great Gift Ideas for a Friend With POTS

Last Christmas my postural orthostatic tachycardia syndrome (POTS) was at its worst. (Not that I even knew what POTS was at that point, let alone that I had it.) I knew I had something wrong with me — I was so dizzy all the time and was so weak, I couldn’t even walk upstairs without getting out of breath and my heart rate would jump up to crazy levels every time I moved. Once I got diagnosed in March, it all began to make sense and over the last nine months I have learned about all the little things I can do to help improve my condition and lessen the likelihood of major flare-ups. These are some of the best things I own that help me on a day-to-day basis that any new POTSies should have on their Christmas list. The holidays are a difficult time to be managing any chronic illness hopefully these will make the new year a little easier. I wish I’d had many of them earlier: 1. A shower stool My mum got me this for my 21st birthday and as she put on the tag it was “a very strange shower-stool 21st birthday present” but it was probably the best and most useful present I got. It was on my list and it was on there for a reason and it has really helped me. POTS symptoms can be made worse by heat, standing and having your hands above your head. This makes showers really hard work. As well as palpitations, I get awful blood pooling in my feet which is really uncomfortable, my feet are often purple and red blotches can rise all the way up my legs. Having a shower stool takes away the standing element and although I still get a little pooling in my feet it has really helped me shower more confidently and independently. 2. A hairdryer stand This was one of the first things I bought to help counteract my POTS, mainly because I was sick of my boyfriend’s awful hairdressing skills (bless him, he tried.). My hair is long and thick and takes ages to dry at the best of times, so this simple gadget has helped immensely. Again, the mixture of heat and holding something heavy above your head can make you really symptomatic; when I was at my worst it was literally impossible so I bought a stand to hold my hair dryer so I can dry it hands-free and it makes life so much easier and less symptomatic. I no longer dread washing my hair. 3. Handbag/pocket sized salt My stepdad got me an amazing little salt pot that fits neatly in the pocket of my handbag when I was first diagnosed and it’s great if you need to add a little salt to your food while you’re out and about and there’s none available. It may not be suitable for everyone with POTS to add salt to their diet, so speak to your specialist about it. 4. Blood pressure monitor Blood pressure medication can be key to helping with some people’s POTS symptoms, but after getting it prescribed, many people are left to titrate it up on their own. If you have a blood pressure monitor it can give you a good idea of what is normal for you and you can tell if something is helping/changing or not. Also many people’s blood pressure readings aren’t accurate when they see a doctor, as stress or anxiety can boost blood pressure. If you can get more accurate readings at home and directly relate them to symptoms, you can show these to your doctor and they can have a better idea of what it is like day-to-day. In my experience, blood pressure monitors also have much more accurate heart rate functions than smart phone apps or fitness watches. 5. A good water bottle with a sports cap Hydration is key when it comes to POTS. It’s the closest I get to feeling like a mermaidwith the amount of water I get through. When I’m feeling at my worst, a bottle of water is a big rescue. Normally a glass or open-top bottle is fine, but when I can’t do anything but lie flat, the sports cap is really important so I can stay hydrated when I just can’t get up. 6. Compression sock or tights These may not be the most comfortable and they are really difficult to get on an off especially if, like me, you also have EDS. But they do help improve the blood flow in your legs and can improve your symptoms. They’re also a good extra layer on freezing cold days. 7. A handheld battery-powered fan Now I know this isn’t going to help right now because it’s already cold outside but you’ll thank me when the summer comes around again. This summer I had finally got the balance of my medication right but then the heat hit and I was pushed two steps back. So be prepared and have it early to survive summer 2017! Happy Holidays everyone and here’s to a happy, as healthy as possible, New Year 2017! Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional. Follow this journey on Invisibl3Girl. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images