Nephrotic Syndrome

Join the Conversation on
Nephrotic Syndrome
191 people
0 stories
17 posts
  • About Nephrotic Syndrome
  • Note: The hashtags you follow are publicly viewable on your profile; you can change this at any time.
  • Explore Our Newsletters
  • What's New in Nephrotic Syndrome
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Sophie Beth

    Moon Face: The Side Effects of Taking Prednisolone

    This time of year is always a reflective one; seven years ago the symptoms of my nephrotic syndrome started. I find myself looking back to a time where I didn’t know what was just around the corner. A time when I took my health for granted and didn’t have to worry about things like treatments and side effects. Anyone who lives with a chronic health condition or is close to someone who does will know how it can turn your life upside down. One day you’re living your life as normal and the next moment you are Googling medical terms and trying to understand why your whole body is changing before your eyes. When I first was put on steroids, I thought that it was going to be a short-term thing, that this whole illness would be over before I knew it. I didn’t know that relapse after relapse would come and I would have to take a load of steroids to just get back to stable. I hadn’t thought about the side effects of the meds because I thought I wouldn’t have to deal with it for long, that it was a means to an end. I was wrong. Two years into my chronic illness and I hadn’t had a break from steroids at all. I looked at the label of the medication pack and it advised to not be on them longer than two weeks and here I was 104 weeks in with no break at all. I had started to feel every side effect possible, the mood swings and the anxiety. I felt like a completely different person, I was lost, and I didn’t recognize myself. It didn’t help that I had changed physically as well. The girl in the pictures from that time looks friendly but she isn’t the girl I was before all this. My moon face was ridiculous — it was so wide, and my cheeks made me look like something out of a cartoon. Not to mention the fact that I could not stop eating; my appetite was out of control, I piled on the pounds and struggled. I didn’t think I would ever get off the meds, I hated it, that I would forever be the girl with the moon-face, who lashed out quickly when I couldn’t keep my emotions in check. I was 19 at this point. At 19 fitting in and looking your best are the pinnacle of importance. All the photos of me on social media were me pulling silly faces. If I made myself ugly on purpose and I was self-deprecating, no one could mock me because I had done it first. There is always a light at the end of the tunnel though, even though sometimes it’s hard to see it. While it took me five years and lots of different treatments to move towards low doses of steroids, I did finally get there. While my nephrotic syndrome will never go away I have found a treatment that seems to control it for now. So, dear 19-year-old me. No matter how much your face gets you down and you feel like you want to hide from the world, it’s all going to be OK. No one except you cares about the size of your cheeks or your scars so embrace them. The mood swings will pass, and you’ll get some help for your anxiety. Life is still going to be hard but give yourself a break. A few years from now you’ll of had a break from the tablets and feel like yourself again. None of this is will last forever. Oh, and by the way, you are stronger than you think.

    Sophie Beth

    Why My Chronic Illness Makes Me Crave Stability

    Being a teenager or a child when you are diagnosed with a chronic illness can make the life before you were ill seem like a distant memory — the time when you were not always living in fear of a relapse or a flare up that leads to a string of bad days. All you can recall now is rushing to hospital appointments, swearing when you leave your tablets at home, and the erratic and bizarre side effects you deal with regularly. I tend to be nostalgic for the years before age 17, when I didn’t worry about what was coming next in life. It didn’t matter if I didn’t have a plan; I was 16 for heaven’s sake. It didn’t matter as long I was having a laugh. I could give my heart away way too easily, spend days laid out on the sofa with no guilt in being lazy, and flick from one thing to the next with ease because if everything went a bit wrong, it was all good, because tomorrow was sure to be fine. Nephrotic syndrome hit me like a bus. How can you be carefree when the uncertainty of an illness you are still trying to understand creeps into every aspect of your life? It is incredibly difficult to perform as part of a rock band when you’re carrying around a stone of water weight and can’t remember the chords because of brain fog. Trust me, I tried. I thought I was super punk rock, but illness complicated that a little. It’s harder to get up on stage and sing when you don’t recognize yourself. Life can become volatile when chronic illness comes along. You don’t know what is going to happen to your body from one day to the next; every morning it is a shock if you wake up and feel good. It’s difficult to feel any sense of normality when you move from the positives of remission to the depression and unknown fate of relapse in 24 hours flat. Instability is just a fact of life when you live like most of us do. People with a long-term illness tend to become consumed by the new way of life they have to lead. Life plans tend to be changed. Dreams tend to be put on hold while you get yourself back on your feet. Relationships change depending on whether the people in your life can handle the truth that you are changing, and life can pass you by. Here’s where this article becomes a kind of love story — I feel sheer adoration for those who provide the stability I crave so much. My partner has been with me since this all started. He is the one who took me to the hospital when I was first diagnosed. Since then I will forever be grateful. He has never let me slip into feeling sorry for myself, never pandered to my anxiety over not being able to live a “normal” life. Instead, he keeps me strong and encourages me to hold my head up no matter what happens. Instability is just part and parcel of my life, our life. But when it comes to our relationship, there is a sense of normality. No matter how I am feeling or what treatment I’ve faced, he will pick me up from work or stroll in the door at half 4 asking what is for tea. I have the stability of knowing we will argue like any couple and bicker constantly, but when it comes to the big things like treatments, he will never question my choices. It took a long time for us as a couple to get the stage where things are stable; meeting as teenagers when I was first diagnosed is not an easy transition for anyone. We have grown into completely different people since we met, but he has been as much to thank for my every recovery as the medication. Don’t get me wrong, I am not saying things are always easy and I know romantic relationships are not what everyone needs, but I’m talking about any relationship that provides you with comfort and support. Don’t deprive yourself of the things you want or crave in life because you don’t think they’re viable with a chronic illness. If you need stability, find it in your own way that works for you. No matter how bad the outlook is or how ready you are to give up the fight, one Sunday morning you’ll wake up and you’ll snuggle into the side of your favorite person, or call your best friend, and you’ll know that whatever comes next, you’re going to be OK.

    Sophie Beth

    Avoiding Holiday Burn Out When You're Sick: Tips

    It is that time of year again when we have all had our flu jab; we are avoiding anyone who sneezes within a three-mile radius, and facing the crowds in order to buy Christmas presents for our loved ones. As December rolls around once more I’m starting to fall into the habit of putting pressure on myself for Christmas. I mean it is meant to be the “most wonderful time of the year.” We all know this isn’t always the case, whether you live with a chronic illness or not. Still, being ill really can change your opinion of this festive period. On one hand, I am more thankful now to be surrounded by family at this time of year, but on the other hand, I am living in constant worry that my symptoms will impact on everyone else’s holiday. This is my seventh Christmas since my diagnosis and it is always the same, trying to get to December and praying I won’t have a relapse, or I will be able to save all my spoons in order to really enjoy Christmas. For years I tried to carry on as normal, but more recently I have had to be honest with myself. I can tell you with certainty if I go out drinking on Christmas eve, there is no way I will be able to really enjoy my Christmas day. I don’t even mean not being able to eat my turkey because I am hung over; I mean being exhausted because I’ve misjudged what my body is capable of in the run-up to the big day. While I’ve been thinking about burn out, I’ve also been wondering how to deal with people who don’t understand your illness, or drain you as you put effort into being nice to people who do not care too much about you. People not understanding what we go through is one thing; I mean we all come to The Mighty to share our experiences that aren’t common.  However, it is hard when we are managing the best we can but have to encounter someone who is not good for our mental health. It is beyond difficult to stay chipper and full of Christmas joy when you are biting your tongue because someone is too self-centered to try and put themselves in your shoes. It’s important to put yourself and your close family first. As for me, I’m learning to say no — no to going out even if I feel like a killjoy. No to spending time with people who do not care about me, and no to putting others’ needs before my own. What I am saying yes to is making a Christmas that works for my family. We have had an exhausting year, with family members who are just recently out of hospital or going through some really tough times. I will put those people first and give them as much love as I possibly can. So if you need a nap half way through the day, go for it. If you have brought all your presents online, good for you! If you need to have a few quiet moments in the corner sipping on Prosecco and not making small talk at the office party, then I think that’s important too. So this year, I’ll be getting into the Christmas spirit slowly and making some new traditions with my family — traditions that suit us all.

    Sophie Beth

    Hating Your Body With a Chronic Illness

    Dear Body, the blobby piece of flesh I call home, It makes me feel super “crazy” talking to my body as if it isn’t part of me — as if I am detached from myself. I suppose sometimes I am. Chronic illness is hard to come to terms with. After six and half long years, I’ve started to think about how I use the hate I feel towards my body and my health to distance myself from my condition. My body is the weakness, not me. I am 23 years old living in the era of body positivity and hashtags of #hotgirlsummer, and I am very much here for the reclaiming of our bodies from the male gaze. This gives me a conundrum, then. How can I run on about loving our bodies and not being ashamed of our individual differences when I don’t see you as part of me? When I feel constantly let down by what you put me through and at times, I can really hate you. Being diagnosed with nephrotic syndrome at 17 changed my whole world. Overnight, I went from worrying about fall outs with friends and making sure I had the latest Topshop jeans to weighing the pros and cons of certain treatments and medications. It was the changes to you that started to pinpoint the health issue — all the water weight I started to have to carry around with me, the puffy eyes and the blood when I was peeing. I was convinced I had just gotten fat at the time, too many double decker’s from the college canteen. I thought I really needed to focus on how I could shed weight quickly and easily. It was when my clothes started to get tight in a matter of days that I knew you were changing in a way I was going to hate. I was convinced I had managed to shrink all my clothes in the wash, that buying loads of new baggy tops and leggings was a style choice and not a necessity. I had my first date with my now boyfriend back then and I didn’t want him to see what you had become. I went to the cinema covered in layers of material that were unneeded for June. Soon, I was wearing my dad’s socks to go to endless doctor’s appointments, exposing my nonexistent ankle bones to nurses and rolling down my leggings to show my bloated white stomach that moved like a water bed. “Are you sure you are not pregnant,” they asked? It always made me giggle. If I hated you, how could anyone else love you? Why would anyone come near me? See, my major problem is, Why do you attack yourself? This isn’t caused by any horrible viruses you’ve caught. You haven’t been invaded, you are inflicting this on yourself. Autoimmune disease, right? So you are trying to protect yourself by waging war upon yourself? How could I ever make sense of that? I’m angry at you every time you bring this back — every time I relapse. Every time you turn into something I don’t recognize — pale, bulging skin so full of water it looks like it can’t take anymore. The fact is, I don’t know whether to feel sorry for you and the fact you have to put up with forever changing. I’ve put you through so much and for that, I am truly sorry. All the destructive treatments that have killed off parts of you, the times I’ve caused you to collapse during a panic attack and even the times I haven’t recognized you because of the side effects of medication. The girl in all my photos with steroid moon face looks lovely, but she isn’t me. At 19, you were covered in the worst scars my consultant thought he had ever seen from swelling and steroids. My stretch marks covered my thigh and legs, reaching around my hips like two giant hands I couldn’t escape from. They are part of me now, the skin that’s so thin and worn you can almost see through it. I thought this was the worst thing you could have done to me. When the jibes came during the summer about the ugliness of my scars, I thought my world was ending. People could tell me until I was blue in the face that they were my battle scars and something to be proud of. I didn’t see anything to be proud of. You had let me down after all, my battle was far from won. Celebrating seemed a long off. When I think about it, you are not all bad I suppose. There are some things I like about you. I mean, we have been through a lot together and even when you’re worn out and every part of you aches, I guess all the ink I’ve covered you in looks pretty cool. I mean, I do really like how long my legs are and you did bless me in the boob department. Most of all, you have never given up on me, no matter how much shit I’ve put you through. I hate to say it, but I don’t think these treatments are going to get any easier. Most of all, I’m sorry for not looking after you. I should listen to you more. I’m so determined to keep fighting that I don’t listen when you are screaming at me to stay in bed, or to not do the stupid thing I’ve decided to do this time. I can’t promise to love you every time I look in the mirror, but I haven’t given up on you just yet.

    Sophie Beth

    Why I Would Rather Make People Laugh About My Illness

    I have always been one for comedy; since I was a little girl I have always aimed to make people laugh no matter what the embarrassment for me. So when my body started to let me down it became the easiest outlet for me. I’d rather joke about my kidneys not working than face up to the fact that this is something that I will have to fight for the rest of my life. See, the thing is (I’m sure anyone with chronic or invisible illness will back me up here) mental well-being goes hand-in-hand with how your body is coping, and for a lot of us that is far from well. I am full of anxiety and over six years of steroids didn’t help this. The title of the article refers directly to me actually; I am a nightmare for pretending everything is fine to the outside world while actually I am struggling either with my kidneys or with my mental health. This is the thing — I pride myself so much on being able to make people laugh that I would rather make a joke at my own expense rather than admit that things aren’t fab. Don’t get me wrong, I talk to my nearest and dearest about the problems I face, but I’ll still try and get a laugh even if I am crying to them. I never want to feel like a burden. The premise of my comedy is simple: if I make people laugh, they are less likely to ask me if I’m OK or feel sorry for me, because do you know what? I am not OK, but explaining to you that I had to have life-changing treatments so I can carry on living isn’t going to make me feel any better; actually, it is going to drag up a lot of issues for me. I guess in a way it is a form of self-defense? It is easier to pull a funny face in a photo than admit you don’t recognize yourself because of your steroid induced moon face, or to tell people your legs look like “corned beef” because of your scars rather than admit they make you feel unattractive at 23 when you should be a confident woman. Finally, my firm favorite is telling people my eggs are fried instead of talking about how much a treatment I had at 17, that might have made me infertile, affected me. I have grown so fond of people like Caitlin Moran and Dolly Alderton who use comedy in their writing to address topics of conversation that people might have been scared away from if it was approached in any other way. So I guess that’s where I find most of my inspiration; their work also encourages me to accept my body no matter how unconventional it may be. Comedy also shows me that it works when people are uncomfortable. If I joke about nephrotic syndrome people are hearing about it but in a way that introduces them to my issues without freaking them out. So what I’m saying really is it’s OK to admit that you are not OK even if you want to use comedy as a way to get through it. You are the most important thing. When we are already so frustrated at our bodies for doing what they do, we do not need to neglect other parts of ourselves. I’ve always spoke to my specialist about how all this has affected my mental health. I’m not saying it’s helped much, but it’s good for them to know what’s going on. You are all worth so much self-care, and remember, even the girl who is trying to make you laugh is struggling. Always be kind and never be scared to speak up. There is no point fighting to get into remission constantly if your mental health isn’t letting you live. Making people laugh may be my ploy.

    Sophie Beth

    Tips for Attending College With a Chronic Illness

    Living with nephrotic syndrome, I was always worried about how it would affect my ability to go to university. When I applied I had only been diagnosed for three years, so I really didn’t know what I was capable of. I spent the whole year after I applied worrying I wouldn’t be able to cope. However, here I am writing this as an English graduate, who got through my undergraduate program in spite of six relapses, being steroid dependent, and sometimes having a bit of swelling. After making it through, I thought I’d focus a little less on nephrotic syndrome and a bit more on life with a chronic illness or as I’ve now come to know it: being a spoonie. As I’ve just finished my journey and a lot of people are just starting university, I thought I’d take a little look at the things that helped get me through. So here are six simple little tips that might help those who are struggling with fighting illnesses as well as making a new start. 1) Make sure the university knows your specific situation. Don’t be like me! Do not leave it until you are suffering through a bad patch or relapse to inform your tutors what you are going through. I was lucky that timetabling helped me so I could get home for my specialist appointments, and even though my tutors told me I could have extensions on due dates if I needed it, I was lucky I always managed to keep up. However, I can’t stress enough if you need support or an extra week on you essay always ask; in my experience lecturers really do want to help. 2) Try not to focus on your differences. It’s easy to get stuck in the mindset that you are going to stick out because you’re struggling with your health, but honestly, so many people are dealing with so many different things, you are not going to be the only one worrying. You have as much right to be at university as anyone; you might not be the last one standing at 3 a.m. on student night, but that really isn’t what it means to enjoy university. I often had to make the choice of whether I went for a drink or got enough sleep for my 9 a.m. class (often sleep won.) Pick the times that suit you to go out and socialize; it’s your experience after all. 3) Share with your friends and housemates. Honestly, showing my flatmates my dipsticks for nephrotic syndrome and everyone dipping their pee in is one of the most surreal and funny experiences of my time at university. It worked though; I wasn’t embarrassed to share anything with anyone after that. My friends have always been fabulous and acted as my support network (even if I was a bit of a flake and never made it to the end of nights out.) Sharing is caring, and you are never going to be able to form close friendships without letting them know what you deal with on a day-to-day basis. If I was moody or upset, my friends understood why, which meant I didn’t shut them out when I felt bad. You are going to spend three years living in each others’ pockets; make the most of getting to know each other. 4) Never push yourself too hard. For me, this is one of the most important things and I’m still on a bit of a learning curve with it myself. Always give yourself “me time.” Yes, you might have an essay due, but give yourself a plan so you can do it a bit at a time and not overload yourself. If you need a bath and to just watch “Friends” on Netflix, then set a night aside and come back to your work with fresh eyes. At the moment I’m still trying to find my balance with my new course, and I can feel the effects of pushing myself, so look after yourself. Remember if you are feeling at your worst, ask for help. Get that extra time or some help from your tutor; take the pressure off and let yourself feel better. You have a legitimate reason to ask for help and people will request extensions for far “stranger” things. 5) It’s OK to go home. I will tell you one thing, I’m homesick right now and I’m 22. Do not beat yourself up on feeling low or wanting to go home for a roast dinner and a bit of TLC from your family. Nearly everyone that moves to university misses home, and we are fighting all the time to stay well, so taking on a great big move is always going to prove difficult and takes a bit of adjustment. For me, I chose not to change specialists because I could get home for appointments and it gave me one less thing to worry about. You have to just do whatever suits you best. 6) Get plenty of sleep. My favorite pastime after my treatment is sleeping. I am struggling to adjust to the early mornings that come with my placement. However, university is different. How much you sleep is up to you. Don’t be afraid to say you need a night off. In my first year, I went to a friend’s to watch a bake-off on Wednesday night, but it made me feel so much better for the rest of the week. I’ve turned down nights out because I knew I couldn’t be successful in my classes on five hours sleep. This is where the spoonie metaphor comes in: you can use your spoons on what you like, but remember your friends, if they are well, will have more spoons to use up. So don’t hurt yourself trying to keep up. All that’s left to say is my time at university were the best three years of my life. Enjoy yourself. Equally, if it’s not for you, do not be afraid to admit it. You can always do something else. Make the most of whatever you choose to do, and always put yourself first.

    Community Voices

    Self Esteem Struggles

    As I scroll through the many #Dysautonomia groups i’m in, I notice a recurring thing.. Quotes, concerns and just venting about relationships, self esteem, sex. So many of us go though relationship break ups, marriages, fertility issues, hard decisions regarding dating, or just to have children. We all look to each other for support and guidance. However, i’m noticing a distinct lack of community for these topics, and it’s disheartening.

    Lets really delve into this. Being chronically ill, we deal may deal with fatigue, wheelchair use, mobility aids, allodynia, hair loss; many others things that affect our self esteem. We may have had horrible dates, or our partners leave us. Guess what? It’s their loss! You’re a warrior, you’re stronger than you think! Most importantly, you are NOT alone. We’ve all been there.

    I’ve struggled with self esteem issues for years, i’m not ashamed to admit that. I struggle to like my body, weight or smile. I’ve struggled to see what others see. In the last year, through counseling and the amazing support of my family, I’m starting to see what others do. I used to worry I wasn’t skinny enough, or pretty enough for some. I always felt I had to overcompensate for it. I hated dating, and the inevitable questions like: “Do you work out?”; “Do You work?”, or my personal favorite “So you’re just reid all the time?Like you sleep all day? That must be nice.” No, no it’s not nice to be so bone tired all the time! It’s not nice to take a shower and then feel like you need to nap!

    Dating was #Anxiety ridden hell at times. You know what though? I had faith that at some point, it’d be worth it. That there is someone out there that was willing to be my cheerleader, rock and partner through all this. It didn’t happen overnight for that realization to come to me, it took a while. That shift in outlook isn’t overnight. It takes time. Time to realize that you, my darling reader ARE worth it. You deserve all the happiness. Your health doesn’t make you worth less!

    Sex… yes sex.. We can all chuckle at that for a minute! With our lack of energy, self esteem, and health greatly affects our sex life. Let’s not hide, or not discuss it. We need to discuss it. We are all adults here (at least I hope everyone is). We want to feel that intimacy with our partners, the desire. Though, I can guarantee you, that there’s times you feel it’s a chore. No! Don’t think that. This is a way to increase intimacy snd strengthen your bond with your partner. It’s important to find ways to do this. Difference positions, are important. Communication is key. Communication is vital in a relationship. We’ve all felt less desirable at some point due to our health, don’t hide it. I’m a firm believer, though I know not everyone is, that sex is important in a relationship and maintaining intimacy. Communicate this with your partner, more importantly, listen to them. Adjustments, trial and error are vital in finding what works best for you as a couple!

    Kids.. some want them, some don’t. I have a son. I’ve always wanted one more. Learning that your illness is so debilitating, that having a child would be difficult is heartbreaking. I’ve been there. Some choose not to have a child due to their health, some choose to try for one. Some experience heartbreaking fertility issues. It’s not easy. These aren’t easy decisions to make, easy things to experience. I’ve had 6 laparoscopies for #Endometriosis. One oophorectomy-right side. 4 cardiac ablations,. I have mobility issues, GP, POTS, OI, endo, IST/SVT, migraines, #Fibromyalgia, neuropathy, EDS and #NephroticSyndrome. I’ve spent the last year with my doctors, discussing everything about a pregnancy, the what ifs, plans, good, bad and ugly. I’ve been told brutal truth, to where i cried. I was in therapy to help in the event I made the decision not to have another child. I was in therapy to process my emotions. To process feeling like a failure as both a woman, and future wife.

    I’ve wondered, and cried thinking about m son having a disabled mom. There’s times i’m upset that I’m not a soccer mom, but honestly I still feel blessed and happy to have him. I know my limitations, and I do what I can. We have a very open communication with him about my health. He loves our movie days. He actually pushes me to use my walker or wheelchair more. Though I know some wouldn’t agree, but I think my son growing up as he is, is learning to be more compassionate, caring, empathetic and understanding. He has a heart of gold, and is such a helper. As much as I struggle, I wouldn’t trade it for the world.

    I know i’ve made comments about feeling fat, or ugly. My fiancé hates when I put myself down. The self deprecating comments, we’ve all said them. We’ve all dealt with all these issues at some point in time. We feel there’s no one to talk to about all this. That no one understands,. You’re wrong. There’s so many just waiting on a community to forge this support! There’s men, and women that struggle. This isn’t just a woman problem. We’ve all struggled. Living with an illness that affects us so much, that has us disabled, or not, we all experience these issues. It’s up to us to build that comity with each other. I see on facebook, people tearing each other down. That’s unacceptable. Be the light! We, as a community should be lifting each other up, not tearing each other down.

    Personally, I absolutely refuse to let dysautonomia destroy my goals, hopes and dreams. I won’t let it control me, I won’t let it rob me any more than it has.

    Community Voices

    Bad Day- First Post

    Hi all, had a really crappy day, my chronic disease is flaring back up so I’m gonna have to do more not so fun stuff to try and make it go away. Not only that but my anxiety when through the roof when I got cussed out outside of my apartment so I had a panic attack and had to take rescue medication. I’m new to this all and I’m just frustrated and feel alone. I don’t know. Any advice for a more positive attitude would be appreciated.
    #Anxiety #Depression #BorderlinePersonalityDisorder #NephroticSyndrome #ChronicIllness

    Community Voices

    Being the big spoonie...

    Relationships are hard at the best of times. It’s normal to fret as a teenager about who you are going to end up with and whether you are doomed to be eternally single. It’s a right of passage to watch Bridge Jones and accept that you will also end up doing shots of vodka and wailing along to ‘all by myself.’ Well, now add into the equation that you have a #ChronicIllness, you are covered in scars, you have to pee in a pot you keep in the bathroom and you have to pop pills constantly. In this Tinder whirlwind of an existence it’s hard enough to find a person ready to commit; let alone ready to commit to constant hospital appointments, possible fertility issues and, the worry of what’s to come for you next.

    I for one was convinced I was destined for the spinster life. After all I think I’m hilarious and in the immortal words of the ‘Angus, thongs and perfect snogging’ books: ‘boys don’t like girls for being funny.’ I mean I was convinced of this way before I got ill, at 17 I was single but at least I was funny.

    For me the world worked in a very mysterious way, I went into hospital and came out with a diagnosis of #NephroticSyndrome and a boyfriend. My best friend had rushed me into hospital (yes I had fancied him for ages.) It took the awkwardness of the first nurse we met to ask if he was a friend or boyfriend to confirm that we were actually together. 6 years later we have been to hell and back with nephrotic syndrome and many other things, but we have just bought a house and are attempting to be adults.

    Anyway,  I’m not here to bore you with my personal life but it is all relevant to the point I’m trying to make. I want to talk about the difficulties of relationships when your fighting your own illness and why you shouldn’t feel like you need anyone either. While I’m super lucky to be with someone who has lived with me through this entire nephrotic rollercoster I know this isn’t the way for everyone.

    I think what I struggled with the most is feeling selfish all the time. I don’t know about anyone else but living with someone makes you feel like you need to do your equal share if not you being the most awful girlfriend alive. This hit me the hardest when I was struggling with fatigue after my rutiximab; My partner did everything for me, drove me everywhere, cooked for me, just gave me a kiss and accepted I was going to be asleep at 7pm. For most people though, that much of a change in the dynamics of your relationship would be hard, especially in the early days or your teenage years. If you need looking after then don’t let anybody make you feel like a burden. You cannot get better if you are worrying about pleasing someone else.

    Right, let’s get to the nitty gritty of it. When we are looking to go out with people we all worry about what we look like. Especially now we have a minefield of instagrams, filters and photoshop. Here we all our thinking OMG we have scars. Trust me, I don’t look like the bronzed, toned girl on the internet, because of this illness my legs look like corned beef (for American readers, that’s an English meat that comes in a can, google it, I’m telling the truth!) Other friends with this disease have #Transplant scars and things like that, it’s bound to make us all feel a bit self conscious when we want to look our best. Getting naked is no ones favourite pass time, let alone when you’ve got extra body hang ups to think about. My body is waging war on itself, It is going to look different.Again, if someone is put off by your scars in spite of knowing what a fighter you are then they are not worth your time!

    The biggest challenge for me in my relationship was the side effects of #Infertility with some of my treatments. We have all heard this whatever gender we are and we all just have to hope that it doesn’t effect us in that way. I was nearly 18 when I had cyclophosphamide and was told there was a possibility I could be infertile. My relationship was only 7 months old and I had to tell boyfriend the news. We were far to young to even consider things like that, but because of nephrotic syndrome the big questions of your relationship can be thrust onto you earlier than you wanted. It’s something we both still talk and think about. I guess ultimately it will impact on our future choices. (Sorry for the over share!)

    What I’m trying to say is, chronic illness puts serious strains on relationships, and I’m sure there is married sufferers out there that can tell this story far better than me. I just wanted to address the young people out there who might feel that their relationships are going to be difficult. They will be, but everyone’s are! Look after yourself and I promise you won’t end up like some sort of Bridget Jones figure, unless that’s what you want, then cool

    3 people are talking about this
    Sophie Beth

    What Not to Say to a Friend With a Chronic Illness

    Here’s a list of things I’m sick of hearing as a person with a chronic illness — explained. 1. “Aw, well I hope you get better soon, babe.” Yeah, soon. I smile and change the conversation to something else. Living with a chronic disease might be hard, but explaining to people that so far there is no cure and you’re not getting better can be even harder. It’s been six years since I was diagnosed, I’m still fighting to maintain a “normal” life. If you are reading this, I will assume you know it is easier said than done. I’m far from ashamed of what I go through and have never kept it a secret in any way. I’m not necessarily offended by the people who tell me “get better soon” when I explain my situation; however, I am not a fan of the shocked and saddened looks I tend to get when I try to explain it’s probably not going to happen. Their reaction seems to imply I am not strong enough or good enough to carry on doing what I am doing. 2. “You don’t look like you’re sick, but I understand. I get colds all the time as well.” Should I make sure I look more ill in the future? Buy a paler foundation so I fit your expectation? I am a trainee teacher who struggles to get out of bed, who has to tell her pupils she has tremors because her “kidneys don’t work” and who, a few days ago, nearly passed out in the classroom. So yes, I may not “look sick” to you, but it’s pretty hard to see an immune system that has decided to wage war on your body, or the fact that I constantly hurt because my immune system has been messed with so much. I am probably at fault for wearing makeup and washing my hair, but why should I apologize for making myself feel better by looking presentable? It’s called an invisible illness for a reason. If you had known me when I was first diagnosed, you’d probably see it differently. 3. “Working part-time must be great though.” I’m so glad you think I had a choice. I have to admit working part-time has helped me more than I ever thought it would. Having a break in the middle and at the end of my week to recuperate is something that allows me to function the rest of the time and not fall asleep as soon as I get in from work. I didn’t make this choice for pleasure, though. I made this choice to stop myself from drowning, to stop myself from spending the whole weekend in bed just to be well enough to go back to work on Monday. It’s not everything you think it is; I am lonely a majority of the time. I spend my time alone resting up and planning lessons. I constantly wait for my boyfriend to get home, binge watch TV programs for company and talk to myself to pass the time. It’s something I need, not something I necessarily want. 4. “Why do you have scars if your kidneys don’t work?” My scars have always been a sore issue for me, but also an issue I want to talk about since it’s one of nephrotic syndrome‘s unexpected side effects. I was 17 when I was diagnosed with this disease and honestly, for a teenage girl who is only just getting used to her body, great big stretch marks and scars did not go down well. It’s inevitable that when you experience swelling, you will get scars and stretch marks — I just really didn’t realize how badly. I didn’t think it would be so bad that I would be stopped by horrible girls at festivals telling me how ugly or offensive my scars were, and that I shouldn’t wear shorts. They are my scars and I will let them out if I want too. I will wear a bikini by the pool and post pictures of them to raise awareness if I want to. They are the only visible aspect of my illness and actually now they are part of me. 5. “Do you really have to pee again?” The simple answer is, yes. Yes, I have to pee. Yes, I have to look at my pee and make sure it looks normal. Yes, I have to pee in a jug and dip it and honestly, I’m not holding my pee in for anybody. It the first sign of danger for a nephrotic patient. 6. “Eternal moon child.” I had to put this in, a good friend of mine called me this once. He meant it in the best way (as in he hoped there was a way to get me off steroids and stop being a “moon child”). Yes, for many years I’ve had that steroid “moon face.” People try to tell me that I don’t look different, but I do. I own a mirror. It has taken getting to a lower dose steroids (the lowest I’ve been on in six years) to get me looking like me again. Don’t get me wrong, I never hated my steroid face, it just didn’t look like me. She was another girl. She was cute, but she wasn’t me. While I am always thankful for those who try to understand; sometimes people need to think before they speak. If you live with a chronic illness, what’s one thing you wish your friends said ? Share your thoughts in the comments below.