With an increasing number of Covid-19 patients experiencing long-term effects such as post-viral fatigue, dysautonomia etc., we want to write a welcome post to all the new chronic illness warriors out there!
We know all of this is scary, but our (not so) little community is a safe haven where you’ll find understanding, support, friendship and advice. To get you started, here are a few things many of us wish we’d known at the start of our journeys with chronic illness.
Find a GP you click with
Your GP is your gate keeper for referrals to specialists, the person you’ll rely on to prescribe medications your specialists order, and maybe even do some research so they can support you as best they can. They will form a key part of your team, often being the central point for all your info., and you need to feel like they’re on your side, advocating for the best care and treatment possible.
Sadly not all GPs are like this. Some can be dismissive, some can refuse to work under the instructions of specialists, some just don’t make you feel listened to. So if you don’t feel like you click with your GP, change to a different one, or even change practices altogether! If you’re not sure who to try as a GP, try asking a local facebook group for recommendations.
Join Facebook groups
If you have an idea of what condition(s) you might have developed, search for support groups on Facebook. They are an absolute gold mine of advice, from lifestyle changes that can help, to advising if something is normal/to be expected with a condition, to the best consultants to see around the country. These groups also offer a safe space to vent feelings, to ask the most intimate questions, and to seek reassurance. Everyone will know what you’re going through and will want to help you.
Make sure you find a closed group so that you know you have privacy once you’re a member. It’s also best to join groups that are based in your country otherwise you get recommendations for doctors and treatments that you can’t take up!
Talk to your support network
Communication is key with family and friends. If they’re not chronic illness warriors themselves, it’s unlikely that they’ll understand the magnitude of what you’re experiencing. The only way that they can understand and know how to help is if you keep communicating. Because they’re on this journey with you, in a slightly different way, and they just want to be able to support you in any way they can.
You can send them information pages you find, summaries of doctors appointments (which is also useful for embedding that information in your memory), anything you think will help them understand and help. If you’re not good with verbal communication, try writing emails or Whatsapp messages.
Be kind to yourself
Think about how you’d talk and act towards a best friend who was going through this, and treat yourself the same way. Prioritise rest and sleep, minimise stress (a huge trigger for many chronic illnesses), drink plenty of water, and try to have a health, balanced diet. As much as possible, stay fit and active. Find things that make you happy and get self care routine sorted so you can turn to it on your bad days. None of this will cure your illness, but you’d be surprised at how much these changes can help your symptoms.
Be patient with yourself. Working out a diagnosis, a treatment plan, and a lifestyle that works for you all take time. There are few shortcuts, and the process can at times be scary and uncomfortable. Find ways to process and come to terms with everything that has changed, including asking for help from your GP if you are feeling anxious or down.
Get ready to become your own advocate
When it comes to chronic illness, you’re going to have to be able to advocate for yourself. You’ll be asked to make tough decisions, you’ll be asked to recite your medical history, and unfortunately, you’ll be asked to justify your diagnoses to other doctors.
Making notes about your medical history can be really useful. During appointments find a way to keep track of what’s being said – a lot can be thrown at you information-wise so take a friend or family member, take notes or record the appointment on your phone so you can refer back to it.
Do your own research so that you know what your options are, what you can expect from appointments, and what your doctor is talking about. It can also help in your preparation for tests and procedures. This research needs to include medical websites and even the summaries of research papers to really get a handle on what your condition and treatment(s) involve. Don’t forget to research alternative therapies in case any of them appeal to you.
All of this will give you tools and confidence to advocate for yourself when it comes to doctors appointments. This is especially important when you’ve waited months for an appointment with a specialist, you’ve got to cram a lot into 15 minutes, and you’re a little nervous. Empower yourself!
