After I was diagnosed with PP, Periodic Paralysis, there were a lot of times where I didn’t know where to look for support. I still struggle to reach out and talk to people when I know that I need help or emotional support. I figured it would be helpful to list some sources of support that may be helpful to other people with PP or chronic illness in general. I hope this is helpful for someone.
I think that it’s really important to have people that have the same or similar experiences as you do to talk to, it can help you to feel less alone. Especially with rare genetic conditions such as PP. Support groups, online or offline, offer a way for you to reach out to other people and find support. They often have a lot of useful information and resources as well. Even if you don’t have PP, there is a group out there that is specific to your chronic illness or other medical condition.
Facebook is a good place to look online because they have groups for just about everything. If you want just general support or more specific support related to your health, both kinds are there. There are tons of groups on Facebook, it may be worth a try. Here is one group specifically for HypoPP, if I find any other sites or forums I will update here: https://www.facebook.com/groups/HKPPNetwork/
Chronic illness is hard not only on our bodies, but our minds as well. It is devastating to go from feeling completely normal one day and suddenly being diagnosed with a rare condition the next. Your whole life changes in an instance and it is very difficult to accept. I’ve struggled with acceptance and it has made me become very worried about what people think. Because those looking from the outside cannot physically see chronic illnesses, people become doubtful and misjudge you based off of that. Judging you as lazy or playing the victim or whatever other negative label.
It becomes even more difficult when you have doctors who misdiagnose or deny because they are too prideful to just say that they don’t know. I remember spending a couple years bouncing around from doctor to doctor and having them imply that it was simply all in my head. Needless to say, it can make you feel a little crazy.
A lot of the time we don’t even realize that there are some things that have been weighing us down. Even if you don’t have anxiety or depression, it’s helpful to have someone who can help you work through all of these emotions and experiences. If you are a college student you can sign up at your university’s psychological services center. Just call and schedule an appointment or walk-in, it’s included with tuition and other fees so you may as well use it.
It helps to have a good doctor that you vibe with, who takes your concerns seriously, and you don’t have to fight with to give you the treatment you need. You deserve better than that. And I know, this is a really difficult process and it’s exhausting. Not to mention expensive if you don’t have coverage. All I’m saying is don’t settle for a bad doctor if you could still find a better one. It matters to have support from your doctor.
Support in Friendship
Find a good friend or couple of friends that you can talk to, even if it’s not about health related stuff. And it doesn’t have to be in person either, a lot of my closest friends are internet friends that I haven’t met in person but they supportive af.
Have Someone Close-by
Find someone nearby who you can invite over to help you or just be there when you don’t feel well. Just one person that you can reach out to if you want or need someone nearby. It helps a lot to have someone to just sit and watch TV with even though you aren’t talking or doing anything. Having that kind of relationship with friend or family member is really calming for me because I don’t have to worry about the expectation of entertaining, talking, or doing much of anything if I don’t feel like it. Another option is to hire someone who can come by and help you out on days that you cannot do things yourself or just need company.