love – Chronic musician

Why sentences that start with “at least” are generally unhelpful

We’ve all been there, someone is having a difficult time or they tell you about something hard in their lives and you really want to comfort them. It can be hard to know what to say when someone is going through a hard time, but sentences that start with “at least” are often the opposite of comforting apart from in a few very specific contexts.

As someone who has been dealing with chronic illnesses and pain for a long time and someone who has been very open with my journey since adulthood, I have heard a lot of “at least”. They have included

At least its not “insert illness perceived to be worse”
At least you have a partner
At least you have money (I don’t but that’s not the point)
At least you get to stay home all the time
At least you don’t have to work
At least you are young
At least you can do X activity

A lot of the time people mean well when they say these things, but sometimes people genuinely think you’re lucky because you don’t “have” to work and they do, or they think that your condition isn’t as bad as theirs, or that there are other conditions worse than what you have.

I am going to try to debunk some of these and explain why even if they were true, they still wouldn’t be helpful

At least its not “insert illness perceived to be worse”

There are a few reasons this isn’t a great thing to say, for a start its really dismissive, illness, pain and suffering are all relative, someone could be having the worst pain of their lives, it doesn’t matter if you think you have been through worse, if its the hardest thing they have been through, then its the hardest thing for them and that is valid. Even if they have been through worse in the past, they are allowed to find “easier” things just as tough to deal with.

Secondly, illnesses and suffering isn’t a competition, everyone is allowed to struggle , everyone has their own battles and they are entitled to support, no matter what other people are dealing with.

Thirdly, diagnosis alone does not dictate how much pain someone is in or how sick they are, or what other circumstances they have in their lives that could make things difficult. There are people out there with diagnoses that are perceived to be “worse” than mine who are actually much healthier overall and have a better quality of life. I also know of people who have diagnoses which are perceived to be less serious than mine who happen to be much sicker than me. The point is, the name of the illness alone does not tell us how sick someone is. Regardless, diagnosis does not dictate how much someone is going to suffer, it doesn’t tell people how much pain you are in, how much you can eat, how much medication you need to function, how difficult things are in their home lives, how difficult accessing care is or anything else that could impact their situation.

At least you have a partner

This is something I get a lot, usually from healthy people who just happen to be single. Don’t get me wrong, I absolutely love my fiance and I am very blessed to have someone in my life who loves me and who actually means the vows “In sickness and in health”.

However, the people who say this to me know nothing about my relationship or if its healthy or not, they just think I am lucky to be in a relationship and some of them even behave as if being in a relationship somehow makes being sick OK or not as life changing.

I am very, very blessed that I have someone who is supportive, kind and compassionate, but, maintaining a relationship when you’re really sick isn’t easy. Relationships in general need a lot of patience, understanding and hard work from both sides. When one of you is severely unwell, you both have to work even harder to keep communication open, to not get ratty with each other when you’re both running on no sleep. It is hard for me sometimes not to get short tempered when my pain is through the roof and I have not slept more than an hour or two for weeks at a time. It’s also very hard for my partner, he has to always be in reach of his phone incase I have an emergency, he keeps a medication list on his phone incase I ever end up in hospital unconscious and he needs to communicate it to doctors, and there are things other couples do every day that we are just unable to do together because of my limitations. The likelihood is that my health will get worse as i get older, and I am already well on my way to getting osteoporosis. He will watch me getting sicker the older we get, loosing more and more function and independence and that is going to be incredibly difficult for him.

To be brutally honest I also find some things more difficult, as when i am thinking about my illnesses I also have to think about him, and our future as a couple, rather than just about my illnesses/me. I have no problem with this at all, I adore my fiance and I would walk through fire pits to be with him. The compromises and thought needed to maintain the relationship are absolutely worth it and I will never begrudge that. I just think it’s something people underestimate, being in a relationship is amazing most of the time, but it is a lot of hard work.

At least you have money

This comment usually comes from people who live in less advantaged countries, who see that I am from the UK and automatically assume that I have lots of money and that this can fix everything.

There are two major things here – firstly I actually have no money, without my mother I would be homeless, I have no income and no way of getting one. Government help for people who are disabled and/or chronically unwell is very hard to access, and it’s very little money. I have access to one benefit, and it’s barely enough to buy the extra things that come with my conditions – gluten free food, skin care for my eczema, a comfortable pair of crutches, splints and other things that generally make my life more comfortable.

Secondly, even people who do have money can’t buy health, you might be able to buy a nicer wheelchair or a more accessible home, you might be able to pay for carers or a big car and a driver that can take you anywhere, but you can’t buy a cure that doesn’t exist yet, you can’t buy pain relief that takes away all pain, you can’t cure your paralysis with money or make things magically accessible in the outside world. Having money may make some things easier, like making sure you get enough food, making sure you have heating and food, but it doesn’t actually make being sick better or easier, and its not ok to tell someone with a serious illness that they should just be glad they have more money than you.

At least you get to stay home all the time / at least you don’t have to work

i have tied these together because they often go hand in hand. People who work/go to school/go out a lot often dream of being bale to just sit around doing nothing. This is because when you have a busy life and are always on the go, having a few days of just doing what you want, spending the day on the sofa or watching movies or whatever it may be, and people think that if you don’t work because of illnesses it’s the same thing. Unfortunately it really isn’t. When you have time off from school or work and you’re feeling well, you can do anything you want provided it is in your budget, you can have fun, you can see your friends and family, and if you have a day in bed or on the sofa its because you choose to. When you are chronically ill and sick enough to be unable to work, it also means you are often unable to do most of the things other people take for granted, people who are chronically unwell often get tired much easier, we are often in pain, some of us find eating and drinking harder and the majority have lots of health related admin and tasks to do. I personally have to make frequent phone calls to medical and admin staff, monitor and administer multiple different types of medications including injections, maintain my hydration the best I can and try to eat enough to keep my weight at a safe amount.

Then there’s the issue of finance, because I can’t work I have very little money, the money I do have goes on essentials that are mainly health related, and I can’t afford to do lots of fun activities. I also don’t have access to a car, and no one who is close enough to me to care has a car big enough for my wheelchair, so I am restricted to activities that I can get to by bus. The buses here only go to 2 locations and are every hour, so they are really inaccessible to someone with difficulty standing or walking for long periods as if you miss one you have an hour wait for the next. I am also at very high risk for infections due to the medications that keep me alive, so that makes it really dangerous for me to do certain activities. For the past 4 years my home has been the only safe place for me, but at times it has been more of a prison as I am quite literally trapped here.

At least you are young

I have to be honest, I don’t really know what people are getting at with this one, I can only think that they mean I am young and have the rest of my life to live? But in reality, being young does not make my situation any easier. I got sick at a really young age, I have been unable to have any sort of career, my social life is non existent, my friends have all disappeared and stopped caring, and I have no memory of a life without pain. I literally don’t know what it is like not to be in pain. i also know that even if my underlying conditions were all eventually cured, irreversible damage has been done to my body, I will never be totally well, and that’s hard to deal with when you’re only in your 20s and 30s. It also means that people tend not to believe me when I try to tell them what I have been through, people think i am too young to be as sick as I am or to have experienced everything that I have, even doctors don’t always take me seriously and many think that I don’t understand what’s happening in my own body.

At least you can do X activity

This is another one, people think that because I can do certain activities that I am fine. For example, I play the flute, I love it, its one of my favourite things, so people think that means my illnesses don’t bother me, or that I shouldn’t be upset about the things I can’t do.

I don’t like to focus on it, but the hard truth is that the list of things I can’t do is a lot, lot longer than the list of things that I can do, and the list of things I can’t do is getting longer all the time. Even the things I can do are dependent on how i feel that day, that hour, that minute, some days I can’t do anything other than curl up on the sofa and try to stay hydrated. There is also an element of just stubbornness a lot of the time, sometimes I have to prioritise my mental well being and I push myself physically to something that will make me happy. This doesn’t mean I am not struggling or not in pain and it’s a really fine balance between the two things.

These are just a few of the examples that I hear on a regular basis, there are many more ways that this kind of comment can be made, and while often well meaning, many of them can feel dismissive and as though the person making them doesn’t really understand.

Next time you are talking to someone who is expressing how they feel or talking about something they are going through, listen and be compassionate, and think very carefully before starting a sentence with “At least”.

Why I disappeared

Last year was one of the most difficult years of my life, I have been through many difficult things, but nothing compared to the sudden and gut wrenching loss of my dad.

In June 2023, my Dad went to work one morning and within hours was driven home by his colleague. My sister managed to talk him into going to the doctors, and the doctor sent him into the hospital for tests and monitoring. This was a Thursday, by the early hours of the Sunday morning, he was gone.

I’m not going to go into immense detail about the run up to his passing or his time in the hospital out of respect to my Dad, my family and myself. What I want to do is share a little of how I’m doing and I can do that without taking away anyone else’s dignity.

The first and most obvious thing is I miss my Dad! I still live at home so I saw my dad every day, I kissed him goodnight every night. I sat and watched his quiz shows every evening tag teaming the music rounds, he cooked me Sunday roasts, taught me how to cook a steak or a chow mien, and always knew when I needed an extra hug at the end of the day. To this day there are still moments where I forget that he’s gone for a tiny second and I expect him to call me from the supermarket and ask what I want for dinner, or to hear his alarms going off all day on a Sunday. Then it hits, that’s never going to happen again, and it absolutely crushes me every single time.

Then there’s the guilt, as I said I lived with my dad, why didn’t I make him see a doctor, why didn’t I do something, why didn’t I make him seek help? The truth is, I tried. Me and my mam tried SO hard, but he didn’t want to, and we didn’t want to go behind his back. Since it happened, I’ve had people ask why I didn’t go to them about it, but the truth is my dad would have seen that as a betrayal, he wouldn’t have forgiven me for going behind his back like that, he forbade my mother from telling my siblings anything, and I couldn’t risk him blaming her either. We did what we could, we offered him as much help as he would allow and in the end I think he went the way he wanted, peacefully. He never liked needles or doctors or hospitals, he wouldn’t have wanted to be poked and messed about with, and I try to remind myself of that when the guilt strikes. I also feel guilty for the fact that during the pandemic we couldn’t have people in the house because I needed to shield, but I have to remember that my dad wouldn’t have wanted me in danger, and he was more than willing to see my siblings outside or in their homes. I know he wouldn’t have forgiven himself if I got sick because of an action he took. The truth is we all thought we had more time. I spent the entire pandemic imagining what it would be like when I could reunite with my family, and in every single vision, my Dad was at the heart, watching his kids be together, proud and loving.

The other thing I want to talk about is the physical impact. I wasn’t sure about sharing this because I don’t want it to be taken the wrong way or for people to think I only care about myself because that’s absolutely not the case, one of the worst things about this is watching what my mam and siblings are going through but its not my place to tell their stories. Grief, like any strong emotion, has physical impacts, especially on people who are already unwell, and I want to share this because when other people go through it I want them to know that its normal, and its ok to talk about it. For me the biggest physical impact is that its really flared up my Crohn’s disease and cluster headaches. I have been in really severe pain ever since Dad passed and I haven’t been able to get any kind of control over it. As well as the physical pain from my illnesses being worse, the mental toll of dealing with them is much higher without my Dad. My dad never had to say much to comfort me. I’d often be sat on the sofa, thinking that I was actually hiding my pain quite well, and he would always glance at me as he went outside for a cigarette. I could always tell when he was worried about me because that glance would linger, he’d pause, look me right in the eye and I knew he could feel my pain, and that alone was so comforting. Then there were the hugs that went on forever, usually when I was about to go to bed, but sometimes just when I was passing him. We were always affectionate, but on the bad days or the worrying days, I’d get an extra long, extra tight hug, as if he hoped he could protect me from the world by holding me closer, and I immediately felt my problems melt for those minutes. As much as anything else, my Dad showed me how to love by being such an amazing husband to my mam, and it’s because of him that I now have an amazing partner.

A few other, smaller things happened after this which delayed my return to blogging, such as catching the flu for 6+ weeks and having to go to the hospital, but the vast majority of the year was taken up by trying to put one foot in front of the other and help my Mam as much as I could. We have just got through our first Christmas , and I got through my first birthday, and it hurt, but we made it. I know that I will one day learn to live with this loss, but there will always be a part of me missing.

Things I am grateful for

When dealing with the day to day grind of chronic illnesses and disability its easy to become lost in how hard things are and loose sight of the good things. To try and balance this I make a real effort to remind myself of the things that I am grateful for on a regular basis.

Now, I’m not saying these things totally erase the hurt caused by living with chronic illnesses and their are definitely days where its really hard to see the good in life, but when I am able to step back and remember the things that make life better it really does help.

A loving and caring fiancé who accepts me as I am

The Image shows Nicola and her fiancé sat close together and smiling. Nicola has long brown hair with a fringe covering her forehead. She has blue eyes and is wearing pale red lipstick. She has a black and grey checked shirt dress. Gareth has dark brown hair and blue eyes, he is wearing glasses with a black frame. He is wearing a blue, brown, orange and white checked shirt with dark blue jeans. — Me and My fiancé

Being in a relationship while dealing with chronic illnesses can bring many challenges, many relationships end prematurely because of the pressure of dealing with the constant health challenges. I myself have had bad relationships as a young woman where my then boyfriend was unable to deal with the realities of my needs, so I know how difficult it can be. My fiancé now is a really loving, caring and empathetic person who makes my life better in every way. We face the obstacles together and we have found many ways of making memories while trapped in a hospital bed or sitting up talking in the middle of the night. I know that its not easy for him to see me in pain and unwell but I know he loves me and is willing to take the bad with the good.

Parents who support me

I know that a lot of parents will stop supporting their children when they become adults and expect them to deal with their problems alone. I am very grateful to still live with my parents and have a safe, warm and comfortable place to live. They have made a lot of adjustments and changes to meet my ever changing needs despite the burden that it places on them. The support and love they have given me throughout my life has made me the independent and confident person that I am now and I will never stop being grateful for that.

The NHS

For those outside the UK who may not know the NHS is the UKs national health service, it is free at the point of use and it is available to everyone no matter their background, income, living situation or what condition they have. In wales we have the added bonus of free prescriptions, so any medication that is prescribed by a medical professional is provided free of charge. This is actually life saving for people like me, without free prescriptions I would genuinely struggle to afford my medication including my asthma inhalers and medication for my cluster headaches. Thanks to the NHS I can go to A&E whenever I feel the need to without worrying about any cost implications or concerns about affording care. If we didn’t have the NHS I would probably be bankrupt and unable to afford anything other than a couple of medicines each month and probably no access to doctors or hospitals due to my inability to work.

Access to good pain relief.

While I know that good pain relief should be a right and not a luxury I am acutely aware of how blessed I am to have access to good pain relief. While no amount of pain relief will eradicate the type of pain associated with chronic illnesses, decent pain control can allow a chronic illness fighter to achieve a reasonable quality of life by making pain more bearable. Because of my pain relief I can do some basic tasks for myself such as washing my hair, looking after my guinea pigs, cooking a basic meal and going to doctors appointments. There are still days where these things aren’t achievable, but without pain relief I wouldn’t be able to do any of it. Without pain relief I would definitely be housebound and likely bed bound much of the time. I will always be grateful for compassionate doctors who care about my quality of life enough to issue pain relief, and I will continue to advocate for all chronic illness patients to receive the same level of care.

My Flute

My flute has been an absolute joy these past two and a half weeks and its a really good distraction from the daily stresses of dealing with constant health admin and chronic pain. Music has given me a way to express feelings and emotions that have been hidden away for a really long time. When its just me and my flute the pain disappears for a while and my soul is set free. It gives me a focus and an outlet in a way nothing else really can.

My mobility aids

When I first started to have difficulty walking I was extremely reluctant to use any mobility aids or anything that would identify me as disabled. I wasn’t ashamed of my disabilities but I was worried that using an aid would identify me as vulnerable and make me a target for judgement or mistreatment. Eventually it got to the point where the pain was just too much and it was n longer safe to keep going without a walking aid. i started small with a folding walking stick that I could put in my bag and only use on the worst days, then i moved onto crutches and finally got a wheelchair when it was clear the pain was beyond control and I needed help to make the world accessible to me. Despite my initial reservations I am now proud to be seen with my mobility aids. I no longer worry about what other people think or if they think I’m faking. My crutches and my wheelchair are extensions of my legs. They allow me to go out into the world, they stop my home from being a prison and they make me feel safe. I know that if I’m in my wheelchair and I get a cluster headache its ok, I’m totally safe. I know that if I have my crutches I can walk a short distance safely without falling or damaging my hip even further.

My Faith

I don’t talk very much about my faith because its very personal to me and I never want anyone to feel like i am preaching at them or trying to convert them, and also because I know that a lot of what I believe doesn’t align with many who call themselves religious. Maintaining faith while dealing with chronic illnesses is challenging, I get told all the time that if I pray hard enough or I’m a good enough person then God will heal me. I get told that I just have to ‘want to be healed’. This is not what I believe. I believe that we are all valuable, that we are all special and important and that we are all perfect in Gods image and that this includes disabled and chronically unwell people. I believe that I am the way I am supposed to be. Having chronic illnesses is extremely difficult, but there are so many things in my life that I probably wouldn’t have if I never got sick. I may not have met my fiancé or talked to him the way I did, I may not have had time to rediscover my love for the flute and the joy that brings me and in all honesty I may not have such a strong faith. There are moments in my journey where I knew God was with me, where I knew miracles were happening, where I felt peace in the midst of chaos and I am so grateful for all of those. I believe God has the power to heal if chosen, but I also believe that I don’t need to be healed because I’m not broken.

My Life

There are so many more things I could list here but I over all I am just so grateful for my life. Life with chronic illnesses and constant pain is really difficult and there is no getting away from that, but the flip side is that you learn to see the joy in the tiniest moments. The cups of coffee first thing in the morning, walking down a street hand in hand, sitting on the beach eating chips or sitting on the sofa laughing at stupid TV shows. I know what it’s like to worry that life may be shorter than you imagined and that really makes me grateful for each day.