You are here now, and we are here for you.
So are other patients that have gone through or going through the process with you. And so are your loved ones.
Stop, take a breath, remember you are not your condition.
Pain and disease can start to take over your life if you’re not careful. We recognize how hard it is to accept at first. We hear you, we understand you, and we want to assure you that you have the full support of the MAYV community behind you.
Stay physically and mentally active. Remain engaged with the people and things you love. You’re the same person you always were. You just have new challenges that you will overcome!
Your doctor is on your side!
Some patients are diagnosed on their first visit, but for some it takes years to come to the right diagnosis. And we understand how frustrating that can be. But remember, your doctors are doing their best to help you, it’s just that they do not have all the answers.
Let’s explain it another way. A doctor is like an investigator or an FBI agent we have seen on TV shows. They see clues (symptoms) and they try to figure out the perpetrator of the crime (disease diagnosis). Because modern science has not been able to figure out the source of these diseases, they revert to making the best intelligent decision given the “clues they have” to try to halt the progression of the condition and to ease the symptoms. There is no cure all for chronic conditions, and as such the doctor needs to try different combinations of therapies until they find the right one for you. This might work on the first try or perhaps after six, and that could be exhausting.
There are good days and there are bad
Flare ups come and go. You need to recognize that some days will be easier than others, but they are just “some”. When they do come, you need to focus on taking care of your needs. There is no trick, there is trial and error until you find what works for your body and your biology.
Yell, talk, scream or even whisper… Just Express yourself!
Don’t fear asking for help. We all take pride in our independence; from learning how to walk without holding someone’s hand to being financially independent. It is a basic human instinct. But asking for help can be courageous and strong. It gets easier the more you do it.
Also account for the people in your life, they want to help but aren’t sure what to do; they too understand how important independence is to you and don’t want to offend you. So talk honestly about everyone’s needs and expectations. It makes everything much easier.
Find the right community for you
There is no doubt that family and friends can be a great support system, but sometimes the support you might need comes from your community.
Sometimes it feels like everyone in your life is treating you like a patient, not like you. Finding an escape where you can be yourself and feel normal [a sense of normalcy]… It can be your neighbors or fans of your favorite sports team or it can be others with your same condition–when you need to talk to someone who gets it.
Find the right community that supports your needs. We at Mayv are here for you, and you are now part of our community. Most foundations (link to resource page) have support networks or facebook groups with local chapters in certain communities. Take advantage of them.
Sharing is caring
Don’t fear asking for help. We all take pride in our independence; from learning how Remember, you are part of a community. You can do your part by sharing what works and what doesn’t; you never know who out there will find your experience useful. And we are stronger together; with the collective knowledge of everybody who has lived with this condition we can help the generations to come.
Your Mental Health = Your Physical Health
It’s not easy to deal with the fact that your own body is attacking you. It’s no light burden! One patient told us that “it feels like my own body has betrayed me.”It’s a daunting thought. Please, please please, recognize it and try to talk about it. Find time for some stress relieving exercises, meditate, or just talking to someone might help. If these don’t help don’t be afraid to reach out to a mental health professional.
An Integrative Approach For An Integrated You.
Our body is integrated. When we are anxious we get butterflies in our stomach, when we are scared our heart beats fast, when we are sad we feel like our energy is drained. Our systems do not work in isolation, our heart is connected to our gut thats connected to our nerves and so on. They are so very much integrated that it requires an “integrative approach” to maintain well-being; one that appreciates the whole human body: mind and soul as systems that are interconnected.
When things are thrown off balance, and we need to look for the full toolbox of possible solutions. This starts with conventional medicine and is complemented with complementary medicine to fill the gaps. You see your doctors every few months, but you have to take ownership of your care between appointments. It’s important to keep track of your condition, stay honest in your journey, and have a team of experts, therapists and resources to support you every step of the way. To learn more about taking an integrative approach, visit our intro to integrative medicine page.
Let’s get to know each other
We want to know what topics and treatments you’re most interested in learning about on our site—because at Mayv, we’re committed to providing the most relevant and innovative content to support our community.