medical conditions

Please note that every person may feel differently about this and their is no right or wrong way. These are just things that helped me personally. I am not a medical professional and cannot give medical advice!

Getting a new diagnosis can come with many mixed feelings and questions. It can make you feel relieved or nervous about your future. Also when your finally told you might not feel like you imagined you would feel like when getting the news. And this is totally normal and ok!

Don’t feel you need to rush back to “normal life”give yourself time to process this important news. You might need time to let you make adjustments like getting home aid equipment to help you round your home when doing tasks such as cooking.

I decided I wanted to write this so that I could share with you some tips and to tell you about the things that helped me when I was newly diagnosed.

This first step is very important to find a professional you trust and feel supported by. If you have already found a medical professional you feel you can trust this is great! Maybe the person who first diagnosed you is the right person. Or maybe you see a variety of several health care providers over the last few months or so and your trying to find out the next steps.

Sometimes when we are on the journey of being diagnosed with a condition we may see many different doctors and health care professionals. Getting referred to different doctors and having tests done. This can become very overwhelming, confusing and tiring tiring. Sometimes we can get diffrent opinions from all the medical professionals you see it can be really hard and frustrating to know who’s advice to follow and leave you feeling unsure and anxious.

My advice is :

Find one doctor you really feel you can trust and feel supported by. Listen to your gut. This could be a doctor you’ve seen for years or a doctor who diagnosed as an example.

When trying different therapies that could help you with your journeyto understand and know how to adapt to your “new normal” iris important thatthis person makes you feel comfortable so that you can ask any questions or raise any concerns you may have. As well as this it’s very important that they have an overall understanding and over view of your case.

When newly diagnosed with a conditions things may start to feel very overwhelming unlike before. You may start to feel that you are alone and no one understands you. Especially if your condition is rare. You may start to see a change in behaviour with becoming more isolated with the outside world. But know you are not alone.

Finding people who understand what your going through can be a huge help.

Not only can others offer you emotional support and help you feel less isolated they may be able to give you practical advice like coping skills. Of course when it comes to medical advice ,your doctor should be offering you advice.

Getting emotional support can be massively valuable. Dealing with a diagnosis and condition can be really diffcult and sometimes by talking to others who have the same or similar condition to you can feel like a weights been lifted as you are talking to others who know what’s it like to live with the condition first hand.

Facebook

There are so many Facebook Groups out there, some are for specific ones for diffrent medical conditions. You may find some that are local to you but don’t worry if you can’t their are others that are open to everyone and you can live anywhere. If they are well-moderated as a member of the group you will hopefully find the group a safe place where you can interact, ask questions and support each other.

However please beware that sometimes these groups can be a little too much and overwhelming. You can put the group settings on “mute” so that you don’t constantly see it but you’re still stay part of the group. Remember you can also leave a group completely. Looking after your health and well-being comes first even when your on screen.

Instagram

Instagram is also a really good platform to use when finding support. Their are so many pages/ group communities for chronic illnesses, disabilities both in general and condition specific. I follow some on my Instagram so be sure to check my Instagram @defeatingdisability to help you get started with funding pages and communities which offer support.

I’n the beginning everything will feel a bit confusing and overwhelming especially when you are working with your medical professional to find the best medication or treatments. When going to medical appointments it is very likely your doctor will want to know how you are reacting to treatments. This may look like an easy question to answer but it isn’t really. You may have a condition that is not easy to keep on track with remembering changing information as it fluctuatios.

This is where a journal may help it helps you to not only remember important information but also allows you to store this information in one place which helps you to access all the information you need quickly. You don’t have to do it perfectly know one is going to judge its simply a space which helps you to store relevant and important information with no judgment.

Keeping track of medication, symptoms and activities may help not only helpyou but your health care professional look for any patterns that maybe recordingand being able to manage and have a plan in place if other symptoms indicateother health issues you may have. By doing journaling can help youfigure out certain patterns that you may otherwise not be able to see. For example “ if I don’t have a glass of water or tea beforedoing my day jobs I find it harder to stay calm.Or when I feel scared and anxious a get a “blood metal”taste in my mouth.

My doctors gave my mum the task of writing down my sezuires. My mum wrote down the following: the date, the time, what I was doing before the sezuire, big, medium,small, any warning before and any other comments .Medical Professionals wanted us to do this to see if they could see a pattern and maybe be able to see what was causing my seizures. At college they now keep a record of my seizures which they get from my 1:1 support worker as she writes my seizures down.

On reflection journaling this information also helped me to understand my new condition more which is now really helpful because with support now I can still try and do every day things like my peers but my support worker and parents also make sure I’m safe. Alternatively if you find writing in a journal is not your thing their are apps you can use tostore this information which is brilliant when your on the go as you just get your phone out and store the relevant information quickly.

Now it’s time to think about what would help you?. Everybody is diffrent. While some things are helpful to one person this doesn’t mean it helpful to everyone. When it comes to health everyone’s journey is different and that is ok. Each one of us is individual and so is our health. You could use your journal to keep a record of things you felt were helpful. From this you could create an “action plan” with your professional and support team around you.

You have just been recently diagnosed so it is really important you focus on your well-being and mental health. You may now start to feel under a lot of pressure from the outside world to get better quickly. Know that it is ok to ask for help. If you struggle with this question ask yourself what would I say if someone I cared about asked me for help.

Through my own experiences I have found out who the realfriends in my life are. I found that my relationships with true friends grew to be stronger as well as showing me that not all relationships I had were as solid as I thought. Though this hurt at times I now have astrong supportive bubble that is growing as our relationships are growing stronger and stronger every day.

I’m not going to lie to you being newly diagnosed with a condition can be challenging. You may feel that your feeling up and down thousands of times in a day. With thoughts and emotions rushing constantly the fears you have. But know this it’s ok to take time out. You are loved, You are valuable, Your journey will make you stronger and help others feel less alone.

Feeling The Feelings And The Mind Rushing

Medical appointments and anxiety have come hand in hand for me since I can remember before appointments I feel really anxious, worried and sick. I’ve had a lot of medical appointments in my life some to do with my disability and others to do with my mental health. Throw in the pandemic and having to wear a mask and then see others with face masks is something I find really scary. I’m not the best with needles either.

Growing up I noticed I would have more hospital appointments than my peers. I’d have to leave school early for appointments. I still do now even as a college student. At school I than began to realise I needed aids like a splint on my leg whereas my peers didn’t have these. I would often have to explain to other kids what it was and why I wear one.

Even know I still explain to peers what my conditions are. When I was first put on medication for my mental health it was in liquid form. However this then changed to tablet form. I found this really scary thoughts would rush around my head.

What if I can’t swallow it?

What if it gets stuck?

Will it make me sick?

Now I find taking tablets ok most of the time but I still get these questions running through my mind. I don’t think I’ll ever get used to incorporating medical appointments into my life as they still cause me stress in different ways but in a way it feels like a routine I just have to go with.

The past year however I have had my medical appointments on the phone and not in person due to the pandemic except for when I had my first vaccine for COVID. After my jab I had to lie down as the felt dizzy. Me and needles aren’t the best of friends.

As someone with anxiety I found doing appointments by phone call were actually better yes I still felt a bit anxious for the phone to ring. But I didn’t have to go through sitting in a waiting room waiting for my name to be called with about a million things going through my mind preparing myself into knowing I had to talk about things I’d rather not think about. I think it helped having appointments on the phone as I was in my safe place and I could do something straightway after my appointment like watch Netflix on the TV.

Breathe

When I start to feel anxious before the appointment and in the waiting room my mum who takes me can see that I’m nervous. Sometimes I say that “ I can’t do it because my stomach is all in knots and I want it to be over before I even have to go”. This is when my mum will help me to do deep breathing and we do it together, I find doing it with someone else is very helpful as I feel not alone and that I’m not stupid for feeling this way and that’s completely normal and valid to feel how I feel.

Reading Emotions

One of the things I have to do now every week is a COVID test at college. I find these very worrying and scary to do and this can trigger my seizures. I think part of why I find it worrying is that you can’t read another persons face very well as the mask is preventing you from seeing things like a smile. The pandemic has made me realise how much as humans we gather information from each other just through facial expressions. I didn’t realise that a smile one small movement on your face could mean so much. That simple gesture conveys kindness and reassurance and a touch of empathy to another person. When seeing a needle is coming towards me and and I’m preparing for the sharp scratch it can be odd not to see a smile from the nurse or doctor who’s doing it not give that smile of reassurance that everything will be ok.

Doing Something Nice Afterwards

Before lockdown after appointments something my mum and I would do is to try and calm down my anxiety levels. By doing something completely different like going around looking at what yummy things we could buy in the supermarkets in the streets. It gave me a chance to clear my head and to breathe. Sometimes just taking a break feels like the right thing to do. As I feel if we just drove back home I may not want to have some chill time and end up doing more coursework or whatever I need to do.

Due to lockdown this way of helping myself calm down is not possible however we do different things for example before a phone call appointment we will organise something I want to do after the call for example taking my dog Mango on a walk or sitting down to watch a TV program. It’s all about doing the self care you can do at home from baking to having your favourite ice cream to making sure if you pamper yourself with a face mask and bubble bath.

If you feel anxious before appointments tell someone you trust, you don’t have to go through it alone!