10 Tips to Ensure You Receive the Support You Needby Julie Cerrone Croner Patient Advocate
Support from loved ones is a very important aspect of any chronic illness treatment plan. As a psoriatic arthritis warrior, you need to be strong and fight through every day, every battle, every flare. It can be a lot to handle on your own. Having others in your life to rely on can help ease the burden. Many view asking for help as a sign of weakness. But it is truly a strength. We don't have to deal with everything on our own. If we allow others to help us, perhaps we will be able to do a lot more in our day, be better able to manage symptoms, attend more functions, and have an overall better quality of life.
Support does not have to come from biological family members or spouses. It can come from friends, neighbors, distant relatives, online friends, support groups — anyone in your life you can trust and rely on.
The key to getting the support you need is educating your support system. As a psoriatic disease patient, we cannot assume that people who know us also know what it’s like to live day in and day out with our condition. It would be asking way too much of them. This provides you with an opportunity to empower your partner and/or support system with knowledge so they can best support you. Here are 10 tips to ensure you receive the support you need:
1) Educate your support system on your condition and set realistic expectations
There will be good days and there will be bad days. The important thing is to educate your partner, or supporters, on common symptoms and your personal triggers. Sharing what it’s like to live on a daily basis, emotionally and physically, will help your friends and family members understand your situation better. If you share realistic expectations on what your activity levels will be, then you can better understand each other. If it is feasible, bring a member of your support team to a doctor visit to give them a first-hand account of what you can and cannot do.
2) Rest does a body good
Sometimes our bodies truly need to rest. And having your support system understand that is very important. Many of us feel like we let others down if we cancel plans or can't do something. Letting your supporters know that you must always listen to what your body is telling you is key.
3) Appreciate all of the big and little things that they do
Cooking a meal, cleaning the house, changing your sheets, picking something up at the grocery store, going to a doctor’s appointment, picking up your medications — these are all things that are very much appreciated. Make sure your partner or support people understand that you truly do appreciate everything they do for you.
4) Let them know that when you feel supported, you feel safe and relaxed
When you are in a state of relaxation, your body can focus more on healing. When you're stressed out, worried, or overwhelmed, your body will have a harder time healing. Having people you can rely on helps your healing process by providing a safe place to relax. Let your partner or support person know you appreciate being able to let your guard down around them and relish their support.
5) Sometimes you just need to vent
Dealing with a chronic illness can be a lot to bear. Knowing that you have someone to talk to is vital to your emotional well-being. Keeping things bottled up inside all the time is not good for health and wellness. Let your partner or support person know that allowing you to vent and release tension in a healthy way will help you in the long run. Also, make sure to tell them that they don’t always need to provide guidance or advice. Simply listening and giving you a shoulder to cry on is all you need sometimes.
6) You value not having to explain every little thing
Having to explain every time you don’t feel well, why you had to cancel plans, or why you can’t eat certain foods can really take a toll. It can become frustrating when people don't understand your condition and situation. Let your partner or support person know that having people in your life who understand it as best they can (instead of playing 20 questions every time you’re having a flare-up) is something you highly value.
7) Let them know that you acknowledge it can be hard to deal with at times
A good friend of mine recently said “Chronic pain and irritability can wreck a relationship. Brain fog from pain can make you forget your normal routine.” And he’s right. When you’re in pain or upset about your condition it can make you lash out and cause problems. Having a chronic condition adds a whole host of problems on top of normal everyday life. Having a talk with your partner or support person about patience, and ways to deal with each other on hard days is important. Let them know that you want them to take care of themselves first — that their health should never suffer because of yours. And that self-care is equally important for both of you.
8) ‘But you look great’ isn’t a compliment
Your partner or support system may make comments that seem endearing, but chronic patients can get sick of hearing comments like, “You’re too young to be in all of this pain,” or “Well, despite what you’re going through, you look great.” Let them know you appreciate the sentiment, but you hope they respect you enough to keep comments like that to a minimum.
9) You can still have goals and work toward them together
Just because you have a chronic condition doesn’t mean you and your partner or support person can’t have goals and do things together. They may need to be adapted to ensure that your body is supported, but having a chronic condition should never hold you back from doing what you want in life. Let your partner or support person know that you value the fact that they’ll push you to live your best life and that you appreciate their understanding when you need to modify or push back. Having a loving and supportive relationship doesn’t have to completely stop because of a psoriatic arthritis or psoriasis diagnosis.
10) Relationships are a two-way street
Make sure your partner or support person knows you’re committed to holding up your end of the bargain in the relationship. It’s important to give back what you can to the ones who are helping you. Ensuring that you’re appreciating and valuing their help is just as important as the support they give you. Recognize your partner or support person for all they do for you. And when you’re able, give back in any way you can.