Managing Communication with Social Environment

Sometimes we all fall into the trap of thinking "they should know……" However the others can’t know until the message has been sent and received!

The more responsibility you can take for clarifying your own feelings and expressing them clearly, while allowing other people the freedom to express themselves in return, the more the lines of communication can be kept open.

If you remain thoughtful in your communication with others, you will find that those around you that who use blameful communication strategies will probably change to become more thoughtful themselves.

Below you will find some tips on how to create supportive relationships

  • Before you say something take some moments to review it and clarify what is bothering you and how are you feeling about it.
  • Be clear in what you say avoiding exaggerations
  • Show respect, regard and be kind with the other person
  • Be honest and open about your feelings
  • Don’t turn yourself into a victim by not expressing your needs and feelings and then expecting others to act the way you think they "should" act
  • Don't demand from others
  • Listen to others and accept their feelings
  • Make questions to clarify things and don’t make assumptions

Sometimes and for some people asking for help is hard. They feel awkward about asking for help or refusing help. The less independent you feel, the harder it can be to seem to admit dependence by showing you need help. It is not easy to admit to ourselves that we can’t do things as easily as we could. This is also a very important area in our communication with others where sorting our own feelings and thoughts first can take the pressure off a difficult conversation. Be always specific about the help you ask for.

 

Effective communication with employers and coworkers

Whether or not you disclose your condition to a potential employer, current employer, manager or co-workers is ultimately up to you to decide. This document looks at some considerations you may want to think about or discuss with family, friends or someone you respect and trust.

Depending on the severity of your condition and disability, there may be physical manifestations of your rheumatic disease that make it impossible to hide. In this case you may have to inform a potential employer about your condition and what this means in terms of what you can do. This gives you an opportunity to discuss how you could manage your work and your condition, for example by flexible working or with possible workplace adaptations.

If your condition is not obvious and your symptoms are not severe and/or well controlled, you will face the dilemma of many other people with rheumatic diseases, whether or not to tell a potential employer, your employer and/or co-workers about your condition. In an ideal world you should feel comfortable about saying you have a rheumatic disease that may require you to occasionally take some time off work for a hospital appointment or treatment, or to work flexibly when you have a flare and/or that you may need to have some workplace adaptations. The reality can be very different. Many people with rheumatic diseases do not want to disclose their condition if they don’t have to, because they want to feel like everyone else and don’t want to be discriminated against because of their condition.

You may feel more comfortable disclosing your condition if you feel your employer, manager or co-workers would be supportive. If they are supportive, you will also experience less workplace stress. Their attitude may in turn depend on your attitude. People will always be more willing to help someone who is trying – and this applies to everyone, not just people with rheumatic diseases! Employers, managers and co-workers do not react well to someone who is constantly complaining, or who they think is using their condition as an excuse to take off more time than they need. This is why good communication is vital.

You do not have a legal requirement to volunteer information about your condition, unless:

  • It is required in your contract of employment
  • Your rheumatic disease might affect your or your co-workers health and safety, in which case you are obliged to inform your employer
  • You may be asked a direct question on an application form or medical questionnaire. If you give false information about this, and an employer finds out the truth later, you could risk losing your job.
  • You will be in a much better position of trust if you provide details of your condition to your employer or manager. Also, if you don’t let people know you have a problem, they can’t help you.

Other advantages to telling your employer or manager about your rheumatic disease include:

  • It can be a strain on you hiding your symptoms and it may be a relief to disclose your condition
  • If your employer or manager knows about rheumatic disease they should make reasonable adjustments for you if you satisfy the definition of a disabled person

 

General rules for talking to your managers and co-workers about your rheumatic disease.

When you talk about your rheumatic disease, you should always remember a few simple points. These apply not just to conversations you have with employers, managers and co-workers, but also more generally.

  • Don’t go into too much detail about your disease and use medical language, tell people only what they need to know – many people do not want to be given medical details, only discuss the aspects of your condition that may affect your work and how you can work with them to find solutions
  • Always try to be positive about your condition (even when you don’t always feel that way) and offer solutions – people soon tire of someone who moans a lot (even if you are not feeling well and have reason to moan a bit!). If you are really not able to cope with your work you may need look for other solutions or consider alternatives. Some ideas you can use are listed below.

Simple things you could say about your condition to explain it and how it affects your work are:

  • A rheumatic disease involves inflammation of the joints
  • Most people with a rheumatic disease will experience pain and difficulty moving around
  • Rheumatic diseases can also cause loss of strength and grip, stiffness and fatigue, which can make some daily tasks difficult
  • Pain can be felt in places other than the affected joint
  • For the majority of people, there will be some good days and some bad days

If your employer or co-workers actively ask more questions and want to know more about your rheumatic disease, the best thing to do is to point them in the direction of your national organisation’s website or the relevant national health department website on rheumatic diseases. They may even find out more about how they can provide support.

When you talk to your employers/managers and co-workers about your condition, remain positive and always focus on what you CAN do, rather than what you cannot. Try to offer solutions

 

Problem Solution(s)

Absenteeism – for medical appointments or related to your condition flaring up

Job disruptions – e.g. arriving late/leaving early, unable to attend meetings, unable to take on extra responsibilities or apply for a promotion

  • If you know when your appointments are or can anticipate when you will have to be away from work, tell your manager as early as possible and find out how you can best manage your workload
  • Find out what meetings you have – could you potentially dial into calls from your home? Or try and participate or stay in touch with the group in some other way, such as through having regular catch-ups with team members or a co-worker
  • Find out what activities or responsibilities are required in your job or that your employer/manager would like you to start doing. If you need support with these, such as adaptations made to your workplace, or help from a co-worker, discuss the options with your employer/manager and work out the best option(s)
  • Your healthcare professionals or local rheumatic disease support group may have some advice or information you could take with you to discuss with your employer/manager
Difficulties with coworkers or supervisor
  • Good communication is essential. Keep people informed so they are able to plan ahead where possible
  • Keep everything up to date in case you have a sudden flare and need to take time off work. This will make it easier for co-workers to pick up from you
  • Make sure that everyone is aware of your timetable and how to contact you if you are not at work
Cannot take on particular activities or responsibilities
  • Select a job that is realistic for you
  • If you are given activities or responsibilities where you feel you need support, such as adaptations made to your workplace, help from a co-worker, or assistive devices, discuss options with your employer/manager. Your healthcare provider or local rheumatic disease support group may have some advice or information you could discuss with your employer/manager
  • You may need to rethink your job and look for other activities and responsibilities you CAN do
Anticipatory coping
  • Avoid the problem from happening, such as by pacing yourself or taking regular stretching breaks
  • If you think an issue may arise in the future which affects your ability to perform your job, raise it as soon as possible and always be prepared to look into and offer solutions

 

Sexual relationships

Sexual life of a person with rheumatoid arthritis is also affected most of the time by the disease and adjustments are necessary in order to overcome fears and barriers.

It is important instead of avoiding or oppressing your sexual needs to tackle the the difficulties. Otherwise you might end up depressed and miserable.

Some useful tips are:

  • Believe in yourself and defend your need to enjoy life as healthy people do
  • Be open and honest with your partner about your difficulties and ask his/her help to overcome them together
  • Find alternative ways for pleasure that make you feel more comfortable and avoid pain
  • Ask for the help of professionals or consultants

 

The decisions of Rheumatoid Arthritis and pregnancy

Pregnancy remissions of RA are very common, but a woman living with RA has some complex decisions to make regarding pregnancy. Can she safely carry a baby? How will the pregnancy affect her RA? Will she be able to care of a baby? What RA medicines can she take while pregnant? Where can she turn for answers?

 

Medicines for Rheumatoid Arthritis with pregnancy

This is not like cheesecake– there is no recipe. Like many decisions related to Rheumatoid Arthritis and pregnancy, considering medicines involves judgment calls. The best thing to do is to get as much information as possible and find two specialists that you can trust – one for Rheumatoid Arthritis and another for higher risk pregnancies.

Some medicines are considered safe during pregnancy. Several RA medicines are out of the question such as methotrexate and Leflunomide because they can lead to abortion or birth defects. Other RA medicines are considered acceptable only at certain doses or during certain trimesters, such as prednisone or ibuprophen. Other RA medicines, like Enbrel and Humira, have not been sufficiently tested to be given a specific rating for pregnancy by the US FDA. However, initial data looks promising.

 

Parenting with RA-useful tips

  1. Be patient with yourself.
  2. Tell your children as much as they want to know, not more.
  3. Use laughter to distill pressure of awkward moments.
  4. Focus on long term goals instead of instant results.
  5. Tell your children where you hurt and how it feels.
  6. Then let them talk about something else if they want to.
  7. Accept help with mundane things like laundry, saving your joints for more tasks that are special to you like their combing hair.
  8. If you can’t do something like comb hair, maybe you can read a story while someone else combs.
  9. Put your effort into what matters to them like reading stories or blowing bubbles or playing Scrabble.
  10. Focus on one another. Take lots of small moments to look into each others’ faces.
  11. Tell the child a little fact about you at the child’s current age so they can relate to your viewpoint or imagine you before RA (if you don’t have JRA).
  12. Be clear about what you expect from them. Give reasons for rules.
  13. Be nearby even when you are unable to participate in their activity. Cheer them on.
  14. Make the relationship a priority over behavior.
  15. Use RA to teach sensitivity concerning disability or limitations. Everyone has a limitation.
  16. Save graphic information about RA for age appropriate situation.
  17. Let the children help you. They could make a bed, cut up food, or carry something too heavy.
  18. Say something hopeful sometimes about your condition or a new treatment.
  19. Play out loud together as often as possible. Tell jokes, watch funny shows, read the comics…
  20. Store medicines where children cannot find them. Be sure little ones do not know where to look.
  21. Help them not to be afraid that they will have RA. The majority of our children won’t get RA.

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