ADVOCATING
I want to advocate to raise awareness for young people, particularly those with long term health conditions such as Lupus and Anxiety, conditions that I suffer from.
While advocating I want to show the different struggles that come with being a young person and how I manage my illness. Achieving your goals and dreams are possible despite any problems you face, I want to show and empower other young people to follow their dreams and not let an illness stop you from living.
THE gOAL
The goal is to raise the profile and provide insight into the lives of young people with long term illnesses. While empowering other young people like me I want to help them discover that they do have control over the choices in their life. I want to assist and share helpful resources with young people and show that having a long term illness doesn't have to stop you achieving your dreams and goals. I want to challenge and change the lack of representation. Finding your own territory is about finding your own place and purpose.
7 stages of Having an illness
These stages relate to my own experiences of being diagnosed, processing and living with lupus, but I believe it can be used as a guide for coping and managing other long term illnesses.
1. Symptoms
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Knowing what symptoms to look out for.
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Being educated and aware of different illnesses can help you better identify your symptoms.​
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Don't be afraid to seek medical help.
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De-stigmatising having an illness is important so that you feel less self-conscious about sharing your symptoms. It allows you to be heard, believed and feel less judged.
2. Diagnosis
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Trying to get a diagnosis can be hard, so finally getting answers can be life changing.
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Finally knowing the reasons for your symptoms is a relief
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Fear of the unknown, not knowing much about your Illness can be scary
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Diagnosis helps to acknowledge you have an illness and enables you to access the right support(eg. Specialist organisations and support groups)
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No more being in denial because you know the reasons for your symptoms, a diagnosis can give you clarity.
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Genetic history - Knowing your family medical history can help understand your diagnosis.
3. Learning & Understanding
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Being properly educated by getting support from reliable sources
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Get Information from known and trusted medical professionals, and try not to be overwhelmed by internet searches with misinformation.
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Knowing and being aware of common hurdles (mental health challenges).
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Acknowledging these challenges are as important as being aware of the physical illness and its impact on you.
4. Treatment
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Finding the best and right treatment for you is important, and accepting it might have to change from time to time. As sometimes this can be discouraging, but this isn’t necessarily a bad thing as it often means improved health!
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Educating yourself about different medicines available and the effects.
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Following medical advice is important, but don’t be afraid to ask questions particularly if you're not happy with side effects that impact your quality of life.
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Although sometimes it can be overwhelming taking lots of different medications, the key to moving forward with your illnesses better health and medication is the first step to that.
5. Grief & Loss
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Having a long term illness can have a significant impact on on day to day life. At times it feels as if you've lost a part of yourself, giving yourself time to grieve over the big changes in your life is important.
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Acknowledge things that you’ve lost and can no longer do, but remember that some things are still achievable.
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Allow yourself to be sad without feeling guilty
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Be open to support during this process, and try not to be afraid to say how you really feel.
6. Adapting
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Finding a way to look at life from a new angle and perspective can help you accept changes that have occurred because of your illness.
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Learning to manage and cope in your own way. I've always used different forms of escapism (Music & Art) to manage.
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Understanding that even if you have a bad day it will get better.
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Finding new ways to do the things you thought you couldn’t, and using resources around that might help. You don’t have to do this alone, you’re not the only person having these experiences and maybe someone else’s experience/ support might help you.
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Accepting that it’s ok to be different. It's s easy to say but can be hard to do.
7. Accepting & Growing
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Accepting your illness, its impact on your life physically and mentally is key to change and making life manageable.
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It's important to find ways to continue to grow despite hurdles. It’s ok to seek advice to do this, but make sure you feel confident and that your voice is heard.
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Knowing that sometimes life will be difficult but knowing and believing you can find your own place and purpose is what I'm trying to advocate.
Kat's Insights
INVISIBLE ILLNESSES
An Invisible illness is just an illnesses that isn't physically obvious. Not being able to see that a person is unwell by just looking at them causes more problems than you would think. Since i was diagnosed over a decade ago this is one of the biggest challenges I've had to deal with. Constantly having people deny that I have health issues just because I don't look unwell is the most ridiculous issue ever. I want to make the world aware that just because someone doesn't look like they are suffering with health issues doesn't mean they have the right to disbelieve them.
COPING & MANAGING
Coping with life in general is hard, especially as a young person. Having to make life changing decisions about your education, career and the future is very stressful. It can become even more stressful when you have to cope with a long term health condition on top of that it can make you feel even less in control and powerless. Learning to manage and cope is the key to conquering. Everyone copes and manages differently, I'ts all about testing different approaches until you find one that works for you.
Katty's territory
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Lupus Uk
awareness.manage.represent
I am currently writing articles and working with Lupus UK to help raise awareness of Young People with Lupus. I want to represent and advocate for other young people and raise the profile and insight
into the lives of young people with lupus. Each of my articles cover different topic that show different challenges that come with the disease and how I've managed and hopefully providing advice for others.
To read my articles for Lupus UK News & Views magazine become
a member of lupus uk
AdvocacyPosts
interesting FACTs
I have a fear of dogs. I acquired it after being 'playfully'
attacked by two dog at a young age.
Look around the website for more interesting facts